M.S. Rebel - Blog

Disclaimer: The information contained on this website is compiled of information on alternative treatments that I have used since my MS symptoms began in 1975. Some have helped my MS quite a bit, that does not  mean that they will help yours. They are mostly anecdotal evidence and you should seek the counsel of your physician before starting any new treatments.

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01-24-12  I am so excited to get started with the HBOT asap. I am exhausted I wrote more on my hbot page if u would like to read about what has been happening...seizures and all.! Yahoo! I'm beat but will update after my first HBOT treatment! Be well! ~ Lisa

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11-04-11  Well things seem to be doing better, my left side seems pretty good. Both sides are rather good, slowly but surely. I even took a nap which des not easily happen. I think I will be able to nap again a little later. I saw my new Neuro on Tuesday, we went over my MRI images which was not good news, my brain is continuing to shrink. He also had me get a blood test to check for a somewhat similar disease called NMO, I have more info on the index page if you want to read about it.  Neuromyelitis Optica is also autoimmune and symptoms begin with the eyes as mine did. Pretty interesting and can be helped through diet as well. I will find out in 2 weeks if I do have this disease as well. I never had heard of it before. ?? Though the damage has been done to my brain, with the scarring and such. However as I wrote below HBOT has been shown to help those lesions. So knock on wood that this years Turkey Bowl will raise enough money to get me started with a home HBOT machine. I will never be able to thank the players enough for their help! I found a different place that I will likely use for my HBOT machine, not just by price but Dr. Saft has a lot of info about him on Facebook. http://www.hyperbaric-oxygen-ca.com/ I will probably start contacting him in February to find the right unit for me. I am excited! Who would have thought that typing could make someone so tired? I guess it's typing and thinking together. Naptime ~ Thanks for stopping by have  great weekend! ~ Lisa

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Things are still going great for Jim and I , he is so patient!  I am still not doing great but hope to be off the prednisone soon, I'm so bloated it makes me sick. Jim doesn't seem to care too much he just likes having his buddy to talk to again as I feel the same of course...if I have not stated it enough. I'm walking a bit better but not well enough for a trip with my sweetie to Bradford. I think he will be stopping by tonight because he will be going to Bradford this weekend. I love speaking with him on the phone but its much better to see and hug him in person! It is really great having my friend back! I guarantee within the next 2 weeks I will be going to Bradford with my honey! I will work on my strength! I like to leave fun and sometimes obnoxious voicemails for him, now I am leaving voicemails with Christmas music after speaking with him about this time of year where Thanksgiving is coming up and the Christmas ads begin! too early!!! It will be so nice to sit down with him and watch a movie together...alone! hee hee :) Have a great  weekend! ~ Lisa

10-22-11  Okay I still won't throw in the towel but (insert your  own expletive here) now it appears the left side of my body is being affected by the MS which is not good as all you MS patients know. The steroids are not really working either another bad sign, though it feels a little better with the fingers of my left side today. ???  I like my new Neurolgist, there is another treatment that is not steroids but is an IV, which is fine with me. So hopefully this new treatment will stop the progression which I have known could happen some day, I'm just not used to symptoms happening to the left side of my body, a bit scary and of course annoying as all hell. I'm 100 % certain that not being able to sleep well for so many years and this past heat spell that sent me to the land of steroids has not helped much either...duh. So now steroids don't seem to be working as they once did, (I'm repeating & babbling again) though my left fingers seem so be working a bit better today. I will be having an MRI on Halloween to check for new lesions to my brain on the right side, since I am now having problems with my left arm and leg. Wee! Now I am really happy I have been looking into having HBOT (hyper baric oxygen treatment) because it does appear that using this treatment literally heals the lesions. However it works much better if a patient is early on, which I am not though the right sided lesions would be new, most of my lesions are on the left side of my brain. Here is one link if you might like to read about it; http://drcranton.com/hbo/HBO_MS_UK.htm    Also, Dr. David Perlmutter out of Florida is a big proponent of this treatment for his MS patients here is his link; http://www.perlhealth.com/perlmutter-hyperberic-center/  Here is a link below that actually shows the area of the brain through MRI of the lesions before and after treatment. http://www.mstherapycentres.org.uk/Philip_James_HBOT_2005_Paper.pdf  That is pretty amazing to see a lesion disappear. Now I realize I am not nearly as early on as these people are that I have listed here, but I don't see any other choice. I am hoping I can get my new Neuro to go along with this treatment. Luckily even if he does not I can get a prescription for the home HBOT machine through my Chiropractor. This is the machine I will be getting. I thank God for all you the Turkey Bowl players, I could never get this without them, thank you , thank you, thank you! Next year I plan to be at the Turkey Bowl to say thank you in person! I have been doing a lot of research into finding the best machine and the best price and the most helpful people. I have found Scott at Airtight innovations the HBOT machine I will purchase is called the Shallow Dive it is a tight squeeze but I know I can wiggle my way into it. It costs just under $7000, which is a whole hell ova lot of money as far as I'm concerned but the best price as well. I admit to being a bit scared to have reached the spot of where the steroids are not working anymore. I am still hopeful and I guess just need to keep waiting, hell it's been 36 years what's a little more time? I cannot complain, even though I do, my mom's friend and my friend Scot didn't even make it to 40. So I'll stop my bitching, and stick to never giving up especially since I have Jim back in my life and have seen what HBOT does to MS lesions! Stay tuned...and have a great weekend! ~ Lisa

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Well  a big yee ha, Jim's busy work season is finally complete so I will get to see him in person more!!! It seems like a lifetime since I've seen him and it has only been about 5-6 weeks. He came by last night, it was to great to just to hug him and hold his hand and watch a really lame movie....so funny. Planet 9 from outer space  He always makes me laugh, especially when I really need it. He was going to come a week ago Friday night, but I was just a bucket of non stop tears. I literally could not stop crying which I know is great for the MS...yeah right. I hope everything will get back to where it was with my MS soon. I started taking 5HTP twice a day and that appears to be stopping the crying, that has been for about 1 week I have been taking it, I know that helps to not be balling my eyes out nonstop. My goal is to exercise as much as possible and not overdue it so I am back where I started from with the steroids and so I can have much stronger legs for walking much, much better. Then I can go with Jim to his house that he built in Bradford, I have not been there for months. We have not done a crossword puzzle in a while either because of his working many hours and he for the moment needs to write the letters in, my handwriting is quite nasty and I get confused because the letters do not look correct. I guess slowly but surely is what I need to stick with, these things cannot be rushed. I'm just really glad Jim's busy season is finished for this year so we can see each other more, and as soon as I am doing better with my walking that will help too. I'm so glad he is my best friend again! One never knows what life has in store for them!

I am one lucky lady! Have a great weekend! ~ Lisa

09-30-11  Sometimes I want to just throw in the towel, I am still needing to use prednisone, the bloat s quit attractive.  The double vision today does seem to be pretty much gone, but I've said tat before. Frustrating! I will be looking into CCSVI but would really like to know I will not have to have it done over and over again. It is so new. I do have a doctor in Chicago that a friend went to and he told me there is supposed to be some new twist that will make it last. I would at least like to at least hear about it.  I am not too positive anymore about actually getting a home HBOT machine, the are quite expensive and I am not positive for certain which company to go with. Remember the saying "A Woman Can Change Her Mind, Can't She?" Well this woman seems to be doing that a lot! I am just confused which unit to go with, and then I read this from this link. Oxygen is increasingly arising as one of the potential beneficial therapies for pwMS in order to induce neuro-regeneration. However, I learned from my doctors, oxygen has 2 faces. The potentially dark one is that it makes cells work harder and, as a result, production of free radicals increases and oxidative stress grows. I learned that any oxygen therapy should be accompanied by caferul monitoring of antioxidant enzyme levels, namely superoxide dismutase, catalase and gluthation peroxidase to make sure the body can handle extra garbage originated in enhanced metabolism It is so confusing, I wish I had had a doctor who had believed in diet when I was 13, maybe this could have been avoided and I'd be a healthy person. However I guess I will never know the real answer that is just my suspicion. This has been a really long 36 years with his crappy disease, I know many of my MS compadres know exactly what I am talking about. I need to go see my GP on Monday to tell her about this stuff and my heart rate is up a bit again, that is why she wants to see me and check for herself.  I have not seen her since I have had all this fun with vertigo, which hope is gone, but we shall see. ??? I've read about people who have had the CCSVI and they can sleep once again with no meds, that is my biggest dream, to sleep with no Xanax. My doc wanted me to have a sleep study but with this new CCSVI info I really don't see the point, it will just annoy me. I also read about people who used HBOT and the lesions in their brains cleared up, I know I have lots of lesions I would love to see go away and feel the difference for myself! I guess only time will tell. Have a great weekend! ~ Lisa

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Still the best part of my life is having Jim in it! I sent him the silly crossword puzzle this week because my right hand is not working so great, he actually did a much better job than I. However it will probably be a while before he takes that role again because he I working so much he just has no extra time to do that. His busy season will end in mid October that will be so great I have not seen him in such a long time, I can't wait to give him a big ole hug and kiss!!! He is worth the wait that is for sure!

I hope you all have a great weekend!
 

09-24-11  Wednesday will be my last day of 10mg prednisone, thank goodness! My right arm is still kinda weak and my sleep is not always very good, so who knows? I have definitely decided that the HBOT machine I will be using when the time comes thanks to the Turkey Bowl is the 25" Newtowne model. It is the best price, and I believe from looking at their website has the best information about their machines. Made in USA, free shipping and first year warranty. I of course will also stick to diet especially since I have seen my blood test results that show the foods my body has an intolerance to. I sound like a broken record huh? Sorry 'bout that! I did not sleep great last night so I'm going to wrap this up and get a hold of the people at Newtowne on Monday. Have a great weekend!

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Jim has been working a lot lately so I have not seen him very much, it will be nice when this repairing instruments season is complete. We of course usually chat on the phone nearly every day. I miss him very much but I shove crossword puzzles down his throat in a sense by copying them (when I remember) and emailing them to him so he can see what I'm seeing. It is not as easy to do them when I am the only one who can see the puzzle, at least that is how it is for my brain. I'll be most happy when he is giving me a big ole hug! It is really great having him as my friend again, I feel we simply need each other and life ahs brought us back together. My MS is making my legs still a bit weak and I still have a touch of vertigo, I have that lovely prednisone bloat going for my face I can't stand seeing myself in the mirror. I hate summer with a passion! I am so glad the cool weather is setting in, but I forget it takes a while for that to kick in to my body and help get rid of the inflammation so I can stop the steroids. Jim is great to for helping me be patient, this is the time of year I am just anxious for the cool weather and no steroids. Okay, time to send the crosswords! Have a great weekend! ~ Lisa

09-09-11  Not yet done with the 'roids but with the cooler weather it is just a matter of time and more patience, I'm getting really tired of that word I must admit. If I could simply sleep my world would be so different. The HBOT experience was very interesting if you would like to read about it please visit that page I'm too tired to type it again on this page.  Have a great weekend!

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I may be quite frustrated with this disease at the moment but am still so thankful that Jim is back in my life, he makes me feel good about myself, and not as frustrated. Though frustration is just part of this crappy disease. We have not done another crossword puzzle again yet but that is mainly due to my vertigo. He brought over a set of Frankenstein DVDs, that has been fun to watch I love old black and white movies!!! Remember Creature Features? If you are from my era and live in the Chicago land area you will absolutely remember... that a hoot! Vampira? Too many fun memories!  I'm also enjoying making more memories! I hope you all have a great weekend! ~ Lisa

09-02-11  I am still in the land of steroids but it is slowly coming to a close, very slowly. The vertigo has never lasted this long, it is at he point of double vision but is lasting longer than it ever has...highly annoying! However I did find the perfect place to have HBOT performed and possibly to buy a unit so I do not have to leave the house especially during the summer heat. I still sleep badly and am having a tough time with my vision so I will not write much more today. The place I will be going to is listed above clinical solutions inc. I'm so glad I kept looking, this place is local and can help me find a portable unit and I can have my first treatment for $50. I will absolutely be going to check it out next week, I can't wait to write about it, I hope I will notice some help. That is certainly not guaranteed but I hope I will notice a difference with my vision, that is making me nuts! I am very excited to at least get the ball rolling! Stay tuned!

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Jim and I are doing very well, he is such a gentleman and so patient! He has been working a lot! The new school year always brings that but such is life it will calm down eventually and we will be able to see each other more. We always start the day chatting and ending the day that way too. We had fun doing the crossword puzzle on the phone too, but my vision is going to stop that for right now. I will be excited to find out what the HBOT can do for me, I want to get back to our crossword puzzles!

Have a great Labor Day weekend! ~ Lisa

08-19-11  What a lovely month of bloating steroids, but finally I am not "spinning" around the room anymore. I am still a bit dizzy but that will eventually pass as the weather turns cooler for fall. I always wonder if that will ever change, sometimes it's hard to imagine that can happen. I would imagine it will still take a lot of healing to my scarred up brain for that to ever go away, but I am always the optimist, okay not always, this vertigo gets pretty depressing. I do know I am very fortunate that steroids do help my body to get back to as normal as possible after I have these lovely "spinning" episodes. I will still be looking into finding the right HBOT machine to purchase with the help of the Turkey Bowl in the fall. I am now leaning towards the Healing Dives unit simply because it has an a/c unit available, though it costs more and I may not be able to get it this year, the heat always kicks my butt and since I am also in the hot flashes part of my life I'm thinking that that could be a really bad thing to be in the unit and getting over heated. It is a tight space for my big butt and I would hate for my legs to get really weak from the heat and have a really difficult time getting out. In such a crazy way I still find this disease interesting, highly annoying but it is fascinating to me to try these somewhat wacky treatments over the years and seeing for myself that diet is the key factor, the thing my Neuros told me have nothing to do with MS. However I suppose on their behalf if one is not taught that diet plays a role, how could you teach that in good faith? Thank goodness that does seem to be changing with the help of old records from Dr. Swank and the new information from Dr. Wahls. However it will likely fall to we patients us to try to teach our Neuros to see that diet plays a key role not just the new drugs they are told to peddle, this could be quite a task. I know I will forever stick to diet as my best bet treatment, I still believe my blood test helped me to see that since I don't think blood can lie. ? I still have a bad problem with falling and staying asleep although some days it is not too bad, but often I rely on Xanax which I know is not for sleep but it does seem to help me with that on some days. That is why I am looking into the HBOT it seemed to help some MSers with that and I am desperate for that help! Though last night I slept really well even though I am taking high doses of prednisone 80mg. It will go to 60mg on Monday for a week, then 40, 20, 0.  I resemble Shamu at the moment but this too will pass, that will be nice!

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Even better, Jim has not high tailed it out of my bloated life, that is a true friend! This is his busy season repairing violins and basses and the like for the new school year so he has been a busy man and I have not physically seen him too much, I really miss not seeing him. I am hoping my legs will be strong enough to get into his truck and spend the night at this house tomorrow! We do talk on the phone quite a bit, in the morning before he goes to work and evening when he gets home. I was having a bad day and one of those days I had not spoke with him before he went to work in the morning it felt really odd like I was missing something, I was...Jim. I will now always find the gumption to talk to him before he goes to work in morning, I did not like that empty feeling. He is such a patient man, I think that will be very helpful for me to not rush so much, healing is going to take quite a bit of time since I am not exactly in the early on MS stage. I also have no idea just what will heal up for me, though I do believe there will be healing, I may never have all my balance back again, be able to run, jump, who knows. Only time will tell with that and I feel most fortunate that Jim is back in my life, that is the most important thing to me, I am the luckiest woman in the world! We were even doing a crossword puzzle on the phone last night from AARP, it was pretty fun though more difficult than I thought. The crossword puzzles I do are pretty easy, but it was fun doing it together even though it was just on just on the phone. I like spending any kind of time with Jim, he makes me happy and puts me in a good mood. And yes I know it will not always be rainbows and sunshine, that works for me, MS brings reality and I think things will work out quite well for us. I feel more hopeful for my life than I have for years. So knock on wood for me that my legs will be strong enough to get into Jim's truck tomorrow. I also know I need to be cautious and careful, I do not want to hurt myself and have to start at ground zero again.

Knock on wood! Have a great weekend! ~ Lisa

07-20-11  I made a basic statement on my index page about my game plan, I am getting tired so I don't thing I can list it all again, if you'd like to read it please go there, sorry, insomnia is still hideous. I talk about what I would lie to try for that and it includes HBOT because it appears that after those treatments lesions begin to fade. I also believe Dr. Wahls has it right with diet but she is much earlier on that I and I want to try to represent those of us who are now using diet but have had MS for as much longer time and probably need some extra help with HBOT for healing those brain lesions. It is stinking hot here in the Chicago land area which is kicking my ass big time! I actually fell out of bed for the first time ever this morning and had to do the I've fallen and can't get up crap. I ended up needing to scoot on my butt to my son's door and rouse him that way, but I was fine I just needed him to stand behind the wheelchair while I could stand up and steady myself and have a seat. It all worked out fine, I just have a bit of vertigo for added fun. Plus of course that lovely prednisone bloat, very hot looking!

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However, my Jimmy is awesome I still can't believe he does not care that I am quite disabled, I look nothing like high school. He even refinished the wooden part of my foldable cane for me. It looks beautiful, he is too sweet! He is so laid back keeps me calm, I feel so safe with him. He does not make me feel badly about myself because I have that lovely prednisone bloat, my chin is huge...yuk! It is so great just talking with him, I love starting my day with a little chat and of course ending the day with a chat or some days a visit. Since it is so hot in the Chicago land area right now he comes to my house. I wanted to spend the weekend at his house but the heat is really making my legs weak, it is probably not a wise idea, I of course cried but he just calmly assured me that he would come to my house. I still cannot believe how lucky I am. We just keep growing closer and closer. I truly do feel that I will continue to heal through diet and HBOT treatments which appear to heal the lesions, this will be yet another new experience for us to grow closer through. I am the luckiest woman in the world!

This gal will never give up! ~ Lisa

07-11-11  My insomnia is still my # 1 worst symptom, but it did feel a little better even since I am taking Prednisone at 60mg, it is helping me to stay ambulatory in this crappy summer heat but it does not help with sleep of course. I met my new GP Dr. Sheron Brown who I like very, very much! I will be getting a regular physical on the 22nd, but will not be able to try the Estriol until I get my period, which with the perimenopause I'm not quite sure when that will be. aaargh! Oh well such is life. I more than likely will not even bother with the CCSVI, I just don't feel there is yet enough proof that this is the answer on it's own. It just makes more sense to me that diet plays the biggest role, especially after having that blood test that showed I have food intolerances, not allergies and a great explanation about that . www.thefooddoc.com/foodallergyintolerancepage.html  I'm sure like every other MS patient we wish our Neuros had steered us toward diet as the cause, but I know for me it has been decades, they did not know. I think everything just takes time and we patients need to show our doctors that food really does make a difference. Thanks to Dr. Wahls I feel in time that will be easier to show our doctors. I also read something very interesting about MS lesions and HBOT treatments that have shown lesions fading after treatments, of course HBOT is not covered for MS. An interesting read; http://www.hyperbarichealingcenter.com/index.php?option=com_content&view=article&id=294:letter-hyperbaric-oxygen-treatment-helps-those-with-multiple-sclerosis&catid=48:news&Itemid=283

I only have Medicare so I'm out of luck there, but that touch football game my brother Bran and friends play n my honor will help with at, so I can at some point give it a try and show results to my Neuro. It's something to hope for anyway.

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I have more hope than ever especially since my high school sweetie and I are still dating, I love it that he does not care that I have gained a bit of weight and often need my cane to walk and am so much slower. I'm needing Prednisone right now so I have that lovely prednisone bloat going for me...very lovely, but he does not seem to care. It will fade when the weather is cooler, I'm still the same person. We are having such a blast remembering old memories and making new ones! It still feels as if we have never been apart, it's so easy speaking with him, I am the luckiest woman in the world! I still don't watch much TV since hooking up with him again, music is what I listen to the mostly, Jazz! I was a huge rock/metal fan it seemed to give me energy but I really enjoy this new music. I actually grew up with this type of music because that is what my mom listens to. We watch movies too, I have not watched many movies, I'm probably repeating myself  but this is so fun! He likes holding hands, something I remember doing with him as a teen and love doing now! My marriage was a bit void of romance and never handholding and such, so it is really awesome to be enjoying this teenager type stuff. We may not be teens, but this is the best time in my life. It is just so nice to have my friend back! That is the most awesome thing, having my buddy back! We speak everyday and usually start the day by IM'ing in the morning and chatting at night. It is so, so great having my friend back! He even cooked dinner for us last night, he is a very good cook! It sometimes seems so unreal, but it is really happening. We still have more to learn about each other but this is so awesome and I have never been happier in my life! It is really nice being able to go through my MS healing with him. That will still take a lot of time, but it is no nice to know he will be with me through whatever happens. We are here for each other, what a great feeling this is! I am the luckiest woman in the world now that I have my best friend back!     Never give up! ~ Lisa

06-04-11   My sleep still sucks, but am now looking into trying Estriol since I am in the menopausal part of my life anyway. When I was pregnant 24 years ago it was heavenly because I had no symptoms until I stopped nursing.  I don't expect it to work the way it did back then I am just hoping that it will help with this hideous insomnia, I figure there is only one way to find out. I also have a consult with a Dr. Hector Ferral out of Rush University in Chicago to find out if I also have CCSVI. It would be interesting to find that out. I am told this is not considered a treatment for MS, but there appear to be many MS patients who have CCSVI. It is interesting reading about this new body malfunction. It certainly would have been nice if this theory had been acted on years ago, but I figure if it is not known about how in the world can a person be treated? Here is some info about that topic if you have note yet read about it; http://sofija.wordpress.com/2009/11/25/ccsvi-discovery-a-brief-story-of-its-background/

http://www.multiplesclerosissurgery.com/

I know many MS patients have died , my friend Scot was one of them and I'm certain many of you have lost MS friends, but I personally feel things just take time. Thank goodness for Dr. Wahls who is also not believed by many of her fellow MD's. No MD that I went to believed Dr. Swank either yet he was right all along. My Neuro at the time told me diet has nothing to do with MS, yep he was wrong too. We all hopefully learn something new every day and that includes physicians, I'm sure many will never believe it because it will impede with their big pharma buddies. I've had several MS friends give me very good questions to ask Dr. Ferral when I see him about the exact tests he uses. This email was from Jackie about questions I should be asking him...thanks so much Jackie!

05-25-11    I took 2mg Xanax last night so I did get a good night of sleep. I am looking for a new Neuro, he does not float my boat. I have found 2 women I may  give a try if they take Medicare that is. The last woman Neuro just told me I needed a walker, what an uplifting doc...pissed me off...fired! I'm 49 and too old to put up with this crap I would like to at least try to find a Neuro (maybe they don't exist) that does believe diet plays a huge role. I know I have a long way to go but after reading about MD Terry Wahls recovery from MS through diet alone, it took her 4 years and I am half way there. I do believe HBOT could be helpful in helping myelinate those lesions in my brain. Again another stupid thing that Medicare will not cover HBOT to treat MS. BS!!  I'm not a big believer in  conspiracies but there is some info on that with the drug companies...what a shocker that would be! Here are some HBOT links;

http://www.raysahelian.com/hericenoneshericiumerinaceus.html

http://www.raysahelian.com/mushroom.html

Supplements available, probably the way I will go when I can afford it. http://www.shokos.com/Amyloban.htm

http://www.hyperbarichealingcenter.com/index.php?option=com_content&view=article&id=294:letter-hyperbaric-oxygen-treatment-helps-those-with-multiple-sclerosis&catid=48:news&Itemid=283

http://www.alternative-medicine-digest.com/multiple-sclerosis.html

http://www.hbot.com/hbot-spect-brain-blood-imaging

Also on the diet side I have and you may have too read about the benefits of Lions mane mushrooms. I first read about it through Dr. Wahls website but here are some more links. I really think I would feel like a different person if I could just sleep!!!  My last Neuro told me I probably get more sleep think, thank goodness my son was there I may have cracked him! I can read a clock for cripes sake! My boyfriend can attest that I simply never fall asleep without some sort of drug, Xanax seems to work the best at least for a few days. So at the moment I will try my hand at these mushroom supplements and see what happens until I can try HBOT. I have seen the lesions in my brain, I would think that would be one way to certainly see if those things are working, get another MRI and compare. ??? We shall see...

For those of you that are following my high school sweetheart experiences, things are still going so great! I feel so blessed that he has given me a second chance, it is so fun and exciting getting to know him again. It's so nice to have a friend and yet it is him! It is so much better than high school. We have a lot in common and he is so romantic something I have never experienced not even in my marriage. It is so comfortable simply talking with him even if we don't have much to say, silence is comfortable as well. Last night we spoke on the phone and listened to the same radio program which we had fun mocking, it was rather goofy music. I am quite smitten with him! I am also still stunned that he wants anything to do with me since I am the one who broke up with him, and now I am a cripple!  He often comes to my house or brings me to his. It still feels like we have never been apart and even more comfortable than in high school. He is very into music and fixes violins and basses, not an easy task. Sorry if I'm repeating myself, but before I met him I watched TV all the time, now I rarely watch it, I listen to music, and music I have not listened to in a very long time. I have been a rocker for years, mostly metal believe it or not. But since I started dating him again in February I listen to music like my mom listens to, the stuff I grew up listening to. Jazz, George Bensen, Nat King Cole, other jazz legends and new music from Keb 'Mo. He has made a song that reminds me of our relationship from the beginning to now, "Just Like You". It is so romantic and appropriate for us. I am nauseatingly going to list the lyrics here, it is a beautiful song! Are you ready to gag yet? I am so glad that Jim is in my life as I am beginning to heal, the happiness he brings me is so much better than the stress and sadness I have felt for so many years. We all know stress does nothing but cause inflammation which we of course do not need! Life is good! ~ Lisa

Hello my old friend
It's been awhile
All our old clothes
Are back in style
We went our separate ways,
Only to return
To face a lesson
We failed to learn

We didn't understand the truth
We were blinded by the eyes of youth
But time kept on moving
And a change has come
You think that I don't know
Where you're coming from

(Chorus:)
'Cause I feel just like you
And I cry just like you
But I heal just like you
And under my skin
I'm just like you

You gave your love and your innocence
And they took away your confidence
Well you're not those women
I'm not those men
Put your arms around me
I am your friend

(Chorus)

(Bridge:)
You and everybody else
When I get hurt
I cry for help
And I've got secrets
That god only knows
And god knows I feel...

(Chorus)

Beautiful picture of real undoctored roses!

May

05-16-11    Sleep is still pretty crappy but I may be feeling a bit of a change since I have added DHEA. I guess only time will tell. I am hoping to try out Estriol, since I am in peri menopause. I was in complete remission when I was pregnant with my son, who knows maybe this will help. ?? Only one way to find out but I will not hold my breath. My Neuro/DO prescribed Gabapentin 600mg for sleep. What a joke and waste of $16!  I felt like I was on an acid trip and it didn't help a tall with sleep. I've never used acid but remember the movie "Go Ask Alice". My awesome boyfriend looked the drug up on line and saw it has nothing to do with insomnia...I am not amused with the doc! He may have extra money to waste, I do not! Enough of that crap...

I am still having an awesome time getting to know my high school sweetheart again.  It just feels so comfortable to me, we can be on the phone in complete silence and it does not feel uncomfortable. I love just holding his hand and watching a silly movie, it feels like home to me. It is great being in his arms again and just listen to music and of course his awesome kisses. He makes me laugh like a crazy person, especially when I need to laugh instead of cry which I often would find myself doing. I like laughing so much better than crying. I find myself doing silly "high school" things like checking the caller ID to see if he called when I know full well I did not hear the phone ring. Life is good! My walking is better since adding DHEA and I use less Prednisone though it is not the height of the summer heat so we will see how that goes. I can only hope! I used LDN previously but cannot afford it at the moment and don't really remember it helping much. ?? I'm glad it is helping others. I will never give up! ~ Lisa

05-05-11    I started drinking that concoction today that might help with CCSVI if I do actually have it. I will never know for certain but I figure what he heck. It did not taste that bad, the honey really helps but it was a pain in the keester to make and made my son gag having to smell it! I will keep drinking 1 Tablespoon every morning before breakfast. I will keep my eye on if I am able to sleep better since that appears to be a symptom that has helped other MS patients I know. Not even close to proof, but it is the best I can do with not a great deal of money and only Medicare. Who knows? Never give up! ~ Lisa

05-02-11    This past weekend I spent the night again at Jim's beautiful house! He cooked breakfast, lunch and dinner things I hope to easily do again one day. We also watched 2 movies, though one movie we didn't end up completely watching!  He is so awesome, I can't believe he actually is "signing up" so to speak to actually want to date me again. This is not anything like when we were teenagers when I could walk and run, all that good stuff that I miss so much, even just being able to sleep is very difficult. I know if I could simply sleep my world would be so different so much better! I could be a better girlfriend to Jim too! I scared him this weekend when I was talking/laughing and eating (a big non/no) and started to choke on my food, I was able to recover obviously but it really scared him, I need to be much more careful from now on. I feel so blessed to have Jim back in my life, it is great getting to know him again. I feel it is even better the second time around and I am looking forward to what the future will bring! I am so enjoying the romance he brings, I never had that before except with him in high school. I obviously missed the boat the first time I feel I am getting a second chance now, I am so grateful for that!  I won't miss the boat this time.

  I am still using the Alpha-Stim on a regular basis and even started using it at night when I go to sleep something it says to avoid, it so far seems to be helping me sleep at least to a certain degree. I miss the days when I could just close my eyes and out I would go for 8 hours. Oh well, whatcha gunna do?  Since I will not be able to afford to have this new CCSVI  treatment performed I will be trying this natural therapy that I list below. I will be getting the ginger juice on Wednesday then I can cook up this treatment and hope for the best. I will not be able to have the pictures of my arteries and such, so I will just have to pay attention to my body and see what happens. I know of  MS patients who have had the CCSVI treatment performed and they sleep like babies, that is my dream! I know my world would change if I could simply sleep! Knock on wood and never give up! ~ Lisa

April

04-18-11    What a wonderful weekend I had! I spent Saturday night with my honey at the house he built 20 years ago, 2 hours away. It was so beautiful, he did such a great job, it does not look 20 years old at all! There were 2 deer that came so close to the house, the lake was beautiful too. It was kinda funny because he had newly painted the walls inside not too long ago and I was touching the walls for balance most of the time, which he later told me somewhat irked him though he knows I needed the walls for balance. The last time we were together 30 years ago I could run and jump all that fun stuff. It is a different world now but he is willing to stick around, I am so glad about that. We watched "the Notebook", which I had never seen. It was such a romantic movie! I am happily getting used to Jim's romantic side, I have never experienced that in a relationship. Wow, what a torture! ha-ha It will be nice to go see his house again sometime, I hope soon. I know I need to seriously work on my leg strength it is quite different from when I was in high school and the MS really did not affect me so much as it does now. I'm used to it of course but I have to think about how Jim views this, not so easy for him, he worries I will hurt myself and I need to recognize that. I am looking into the CCSVI but it will be some time before I can afford it. So, in the meantime I found a link for a natural alternative that treats stenosed veins. http://golbanoooo.posterous.com/natural-therapy-for-clearing-blockage-of-hear  I figure it sure can't hurt and wouldn't it be a hoot if it actually did the trick? I love trying new things! I plan on making some up today!  Stay tuned! Never give up! ~ Lisa

04-03-11    My back is getting better everyday but still have a few treatments to go. I have been exercising and stretching more every day but being careful not  overdue it.  I personally believe diet has everything do with treating/curing this disease. It has been 2 years for me with serious diet changes, I just think there are too many instances where diet has shown to play a role, Swank diet and others. I know I need to stick with affordability as well. I was fortunate to be given the Immunosyn vaccine for 13 months, it was great that it got me through the summer heat and brought me out of vertigo twice but I will never be able to afford to use it again. I also will never be able to afford CCSVI and am not sure I would want to risk it. I know of 2 people who have had this done and it has not really made a big difference as of yet. Then I remember reading about the people who bled lout during he procedure.  My life is so great now that my high school sweetheart is back in my life, I would not risk that. It has been so great being back with my Jimmy, we both feel like we were meant to be back in each others lives, it feels so natural like we have never been apart that we were supposed to have found our way back to each other. We sometimes finish each others sentences, have the same thoughts. This is the most amazing time in my life, I never thought I would ever be this happy again. AJ likes Jim too, another musician! My mom is very happy too, I was always sad & crying all the time, watching too much daytime TV not feeling very hopeful for the future. I know AJ is happy too not see and hear me crying all the time. It still seems unreal sometimes, I will always be grateful to Facebook for bringing Jim & I together again! I am listening to free Pandora with the songs of the 80's Jim & I used to listen to...great flashback! I have not watched TV in a long time thanks to Jim, just music, and music he has burned for me, he is so good to me and for me. I am looking forward to the new memories we will forge. Life is good! ~ Lisa

   My Jimmy, he looks just the same as I remember when holding his hand in High school! Yummy!

March

3-19-11       My back is feeling better but still a ways to go. I ended up not going to Carly's birthday, I had laryngitis. It made it kinda funny speaking with Jim on the phone with no voice. He sent me pics of the house that he built along with one other person and a cute pic of him (I love his long hair),  I will be excited to see the house in person one of these days. I'll put up all those pics once my tired brain is up to it. Sleep is still not great but being in contact with Jim sure is!!! This is fun catching up and reminiscing about the old days and looking forward to the new memories, not in a million years did I think this would ever happen but am really glad it did! I have never experienced a romantic relationship like this!!! I like it!!!  I am still using the Alpha Stim unit, I'm not ready to give up on that either.  I was able to get my back to "crack" on it's own today, it felt great! I'm also keeping up with the MS diet aspect, that I can afford. I realize it will still take some more time to recover more, but I am willing to wait, especially now that Jim is in my life. Okay my back is getting a bit tender from sitting so long.

Have a great weekend! ~ Lisa

03-10-11      My back is feeling better but I still have a few more treatments to go. I was given the okay by the doc today to stretch at home and I can do my plie's which I love doing! Also I am looking forward to be going to my niece Carly's 16th birthday on Sunday, I have not been up to going to a family function for at least 3 years! I feel that being up to it is due to my diet for the past 2 years and also dating my high school sweetheart. That has been amazing! Dating is actually talking on the phone and when he comes over to my house. This is quite surreal for him because I still live at the same house that I lived at in high school! If you do not want to read about mushy romantic story you should change the page! :-)  I was thinking about Jim one day and was curious if he was on Facebook. I typed in Jim's name and there he was, so I decided to try to friend him. I broke his heart by breaking up with him so I did not expect to hear back from him. It took him a bit after looking at my Facebook friend request, but eventually he decided to contact me. That was February 6th and we  just kept emailing each other and then I received a card in the mail on Valentines day, it was not an actual Valentines Day card, but he did write happy Valentines Day on it and he did not think it would get to my house by then...but it did right on Valentine's Day! In the card he actual sent along a picture of me from high school that he took, (so much thinner!) I could not believe it! It has been 30 years! Then on my birthday February 18th I received a birthday card, with another picture! When my scanner is working properly I will scan them and put them on here and on Facebook. While we were emailing we decided to talk on the phone for the first time in all those years, it coincidentally was also on my birthday. One of the emails I sent to him I wrote, I feel like such a dork, I'm so nervous! So when it came time for me to call him I was getting more nervous and trying to think of something clever to start the conversation. So when he picked up the phone he just said "Is this my dorky ex girlfriend?" I bust a gut, that was so funny. We talked for 2 hours! It was like we haven't missed a beat, it is still so easy speaking with him. We are taking it very slowly, after all I broke his heart. I still feel horrible about that but I do believe everything happens for a reason. He even brought over a hospital type bed that a family member had used. That has really helped my back. Jim picked up AJ to help and was a bit taken aback when he saw how much AJ and I look alike, the nose and long hair.  It was also so strange for him driving into the same driveway that he did 30 years ago to pick me up for a date. That bed is really heavy, it took AJ, Jim, and my brother Bart who lives in the upstairs apartment. I could not believe he went to all that trouble and he had literally just gotten home from a long weekend. He ended up hurting his back too, I still feel guilty about that. We hugged and it was awesome, I'm so glad he decided to answer my Facebook friend request. Life is good! I seriously feel like I'm back high school, the silly stuff... is he going to call me? He makes me laugh so hard I can hardly breathe, AJ is the only other person that can make me laugh like that! He is so romantic, I'm not used to that at all except when I was dating him back in high school. I hope I never wake up from this dream!!! My back is hurting now too, too much computer. I'll update soon! I'm so happy!!! Be well~ Lisa

February

02-18-11      Happy Birthday to me! the big 49! I'm feeling really great especially since being in contact with my high school sweetie! My back is still a problem but the Chiro treatments really seem to be helping, knock on wood! I need to take it easy, I probably should not even be sitting at he computer. Silly me!.. Stupid me! my back hurts now, time to go! I'm using that Alpha Stim, but probably not sure if it will really help my insomnia, at least there is a money back guarantee! The Ampyra does appear to be helping me to move around more smoothly, but it is still nothing like the Immunosyn vaccine! Oh well, life goes on! ~ Lisa

02-11-11      I had my first treatment with the chiropractor on Wednesday, it was a long day! I was supposed to have another treatment yesterday but it was so cold, sub zero so I decided to reschedule, afraid if I fell on the ice things would be even worse. So next week I will  go back, my back does feel much better dafter just the one treatment! This upcoming week I will receive my Alpha Stim, paid for thanks to the Turkey Bowl, thanks guys & gals!  My friend Fran is using this product with success for her insomnia so I thought I'd give it a try, it has a 30 day MBG. I am getting around more smoothly since using the Ampyra, it showed when I went to the Chiro on Wednesday when I had to turn over from my back to my front on this little table. I did go see a different chiro previously (2010) but did not care for him, the treatment he used seemed lame to me, it felt like a tracing wheel being run down my spine. I noticed no difference with MS at all so I did not go back to him. Sorry I'm getting off track, ...I noticed as did my mom when I was turning over on that little table this past Wednesday that I was moving much more smoothly, it did not feel scary this time, my mom felt he same way. I will also be excited when I receive the Alpha Stim it is also supposed to help fatigue which I always have as I'm sure many of my fellow MSers can relate. I'm so tired all the time, I don't even have the gumption to put on makeup to cover up my dark circles, I feel hideous! I will also keep saving $ to maybe one day have Adipose stem cells, another dream, who knows maybe one day I'll win PCH...yeah right! LOL a girl can dream! I also plan on updating my site once I have this energy that the Alpha Stim is supposed to give me. It does sound pretty hopeful! It will likely arrive on Tuesday or Wednesday! Stay tuned! ~ Lisa

02-04-11      The blizzard has set things back a bit, and my back is killing me! The Ampyra is helping me to move around more smoothly, so far so good. My insomnia is still horrible. I am sticking to staying away from those foods my blood showed I have an intolerance to however being tired all time and not being able to walk great I often would end up eating dollops of peanut butter.  My face is so fat I hate to look at myself. I weigh what I did in high school. but I high school I started walking 3 miles a day , to my friends house then back home. I lost 45 pounds...I am so frustrated! I won't touch peanut butter again, I'll just be more careful and exercise more and hope I don't rupture another disc. This disease really sucks!!!  I'm taking more Sam-E so I'm not crying all the time, I think that upsets my wonderful son. I'm certain I am forgetting something, I'm so tired. I will update my website with the treatments I am currently using and get rid of the stuff I am not, my site does look confusing...sorry bout that! Never give up! ~ Lisa

January

01-21-11     I thought I'd make a quick update with some bad news for me. When I had my first MRI to my spine last month my Neuro showed me that I have a ruptured disc at T10/T11. I never knew what the T number thing was about unfortunately now, now I know. My back hurts a lot, my son is having to help with even more things, makes me feel awful! I will be going to a Chiropractic practice who does a treatment called spinal decompression on Monday! :)  I hope it helps, it was interesting seeing their website; http://www.painfreenaperville.com/  So I probably will be taking a break for a while updating because it hurts my back to sit at the computer too long. I will also have to use the $ I had saved for the adipose stem cell treatment for this back problem. $h*!  Oh well, I really need my back to be working better in order to go and have the stem cells. so that will be at least anther year before I can try that. I will also nee to use the $ for a new mattress, I can tell that is not helping. It is pretty much the bed frame, a slab of wood and then the mattress, can't imagine why my back hurts. LOL! Any way, I pray this treatment starts to help, though it likely will take more than one treatment. ?? Oh, the Ampyra does appear to be helping me move more smoothly, but the back pain is definitely hindering that, again, $h*!  Oh well, life goes on.  Never give up~ Lisa

01-11-11      I am definitely not at all living up to my last name with updating my site...sorry. Happy New Year!  My mom took me yesterday to get my eyes checked because my current reading glasses from the drugstore are not working so well. I have not to the eye doctor since 1975 when my first MS symptom happened when my vision went from 20/20 to 20/70 in my right eye with blindness. That was summer and when the weather cooled off my vision cleared up on its own. He said my eyes look healthy, but I need a new RX for my eyeglasses. It is snowing like crazy today so I will not be able to be fitted until the weather clears up a bit. I wont  push it. I have slowly noticed that my balance seems a bit better since starting the Ampyra, as has my mom when we walk together. Possibly even a bit of help in the insomnia department. ??   I just need to keep making notes in my notebook about that. Little by little, today it appears typing is easier the feeling in my fingers seems better, again I think I will just have to just pay attention. As I am typing my eyes are beginning to hurt a bit so when I get my new glasses in a couple days I will update more from my notes I have been keeping since I started the Ampyra on 12/30. I'll have things updated by Friday, my brother Brian's 50th birthday! Oh crap that means next year I turn 50...yikes! I hope I feel much better in a year time maybe even I will have the bucks for the $4950 adipose stem cell treatment. Only time will tell!

Never give up! ~ Lisa

December

12-31-10     I started taking the Ampyra yesterday. It is to be taken 12 hours apart 2 pills daily. I took my first dose at 12:30 pm, then after my brain began to start working I realized that was not the brightest thing to do, since the next dose would be taken after midnight...duh! So I did not take the second dose until 8 am this morning. So tonight I will complete the full dose of 2 pills at 8 pm. I also did not get around to having my mom film me walking, but there is time for that. What I did do was write down the date and print in block letters my ABC's, 1-10 and write the words "cursive writing" in cursive to compare over time. Other than my handwriting being very bad, my brain has a really difficult time keeping up with what I am thinking while I am writing.  I can only write using block letters and if I am really tired which I usually am, the letters are not very legible. I ended up taking 2 mg Alprazalam last night because sleep still evades me. I sure hope over time the Ampyra will help with this "expletive" insomnia. Another thing I will be doing just to try to get the opinions of other doctors about MS and the dietary aspect is to write to Dr. Oz and The Doctors TV show to see if they are able to tackle this subject. I realize they are not Neurologists, but am curious if they have the stones to speak up. Every Neuro I have gone to have all told me diet has nothing to do with MS. After 35 years with this disease I completely disagree with those Neuros, my present Neuro also does not believe diet plays a role...BS! I now know of so many MS patients who have changed their diets and have noticed how diet does play a role. I would also like to see if they have an opinion on the blood test and hair analysis I had done that showed I do have quite a few food intolerances. I do realize these are not food allergies, but would like to hear their opinions about these food intolerances. I know I cannot go back in time but will always wonder if these tests had been around in '75 if my MS would not have advanced to this point. ??? I guess I will never know the true answer to that but will stick with staying away from those foods and follow the MS diet which I did not believe in at 13. One can only try!

Have a Happy ands safe New Year! ~ Lisa

12-25-10     Today I am rockin' out with Pandora.com! I slept pretty well thanks to Alprazalam however from past experience that will only help for about 3 days at 2mg, then I will have to stop using it for 2 days and get it out of my system then I can take it again. What a PITA that is! If I could just sleep I think I would be doing much better. I just found out on the 22nd that my first shipment of Ampyra will arrive on the 30th!☺ I'm so excited!!! Hopefully it will help with my insomnia and not give me vertigo! I am very hopeful but only time will tell. My mom has a camera that also records video so I am going to have her film me walking with and without my cane before using Ampyra and a few days after using the Ampyra. I look so horrible so I'm not excited about showing those pics here, but I want to share how I am doing with others if that can help any of my fellow MSers. To heck with vanity, I have no had the gumption to even put on any makeup for several years or even put in any earrings in my grown over pierced ears. I will need to embrace my turkey neck! The most important thing I guess should be noting any differences in my walking not the size of my thighs! LOL  I know I'm not 18 anymore, I'm 48 and I'm sure I'm not he only person who has aged not as they might like to have...such is life! This next topic has nothing to do with MS, but it was awesome to see. On the 15th I let Daisey out into her little fenced enclosure where she barks at the squirrels and other dogs. But this time she was all fluffed up and barking differently, I looked out of the window and there was a coyote, then another one! I'm guessing mom & dad looking for food, I called for AJ to come look at the coyotes. I should have had him bring the camera but they were gone by the time I thought of that.  I was so proud of my little Daisey dog, my little protector! It has snowed a lot more since then. I saw one of them a few months ago in the neighbors yard but not together, we saw a possum yesterday too it was so cute!

I hope everyone had a fabulous Holiday weekend! I can hardly believe it will be a new year a week from today! Never give up! ~ Lisa

12-18-10     Right now I am just enjoying the holiday music at Pandora.com. On the reality check side of having the adipose stem cells, that will take a while to raise the money, but I will be excited to have the treatment done one day. In the meantime I decided to take my Neuros advice and find out about getting Ampyra. I found out that because I have very little money that I qualify to get the treatment for free! I have to fill out some forms and fax them to the Ampyra people but I am pretty excited to give this a try. It will certainly be faster than raising the money for stem cells. I did some research and Ampyra sounds pretty hopeful for me, but only time will tell. Some patients even commented on how the treatment helped them to sleep..my #1 worst symptom, so this will be interesting. I have also been thinking a lot about, and speaking with my son on how it is pretty depressing living where we are living. This is the house I  literally grew up in, the house where as a teen I could mow the lawn, shovel the sidewalks, take my late dog Cupid for walks and such. I could take the garbage out, and I cannot do any of that right now. I was able to get my son to understand why simple things like that stresses me out, stress causes inflammation and I certainly do not need anymore of that. As I am writing it makes sense to me at least.?? I'm trying to see things a bit differently now, I will forever stick with staying away from the foods my blood test and hair analysis showed I should stay away from even though my Neuro does not believe in diet making any difference at all. My new DO, Dr. Ahmed was giving her input on Neuros not believing that diet makes a difference, and it makes sense to me. She was simply stating that if a doctor is not taught about dietary influences than they would have no reason to speak about it with their patients. Who knows maybe I can teach him something. ?? I went to see my thyroid doctor on Wednesday and he believes from the tests I had done that the hypothyroid is a combination of taking steroids, the past summer heat, and perimenopause. I have no cancer, which is very good. It is possible that during the summer heat when I need to use prednisone to keep walking that I will need to use some meds for my thyroid. I wish I had big bucks, I would get that SF1019 vaccine in a heart beat. No steroid bloating, I would guess if I was able to use that vaccine, the hypothyroid symptoms would have never happened. I guess I will never know. I am going to have my mother film me walking before I start using the Ampyra and after to visually see any differences instead of my just giving my opinion. I will hate seeing myself, but what the heck! I have been reading a lot of info from MS patients who have used Ampyra, it sounds pretty hopeful but there is no way to know until I actually use it. I will have my info faxed to Ampyra on Monday to get he ball rolling! Have a great weekend and never give up!  ~ Lisa

12-03-10      I thought I would update on my game plan. I am still excited to begin electrical stimulation but am currently recovering from a huge stress exacerbation so I am currently using Prednisone. I am taking 60mg daily until Monday, then I will wean down weekly until I am finished coincidentally on my mom's 78th birthday on the 21st! I've been doing quite a bit of research on electrical stimulation devices. Dr. Wahl's uses an NMES unit. I am doing more research on if I should use a TENS unit or NMES. But am thinking since I am just getting over this past exacerbation I probably should not push myself too much. I can be my own worst enemy when it comes to that. The game plan in my head is to stay with my dietary changes, add electrical stimulation and have stem cell treatment in Phoenix with my own fat cells. My Adipose stem cell treatment  The biggest reason for that came after listening to a lecture by Dr. Wahls where she mentions that even though she is able to now ride a bike and walk long distances her MRI's still show her lesions. I'm just curious if after I have the stem cell treatment if the lesions in my brain will change...?? I just had an MRI to my brain and to my spine for the first time. I see my new neurologist on the 9th to go over the results and such.  I am quite strict with my diet, but not nearly as strict as Dr. Wahls is. Of course I am no doctor not even close just a frustrated MS patient searching out treatment that may actually help my MS of 35 years to go away or at least controllable. So I am hoping that between diet, electrical stimulation to my muscles and Adipose stem cells I can have some sort of recovery. As always patience will be needed, I'm getting quite good with that! Never give up! ~ Lisa

November

11-13-10     I will be so excited to finally begin the electrical stimulation, I am of course unsure if it will help my worst symptom of not being able to fall asleep. I'm presently taking Alprazalam, 2mg helps me sleep best  but it makes my legs feel weaker, this I don't need. 1mg is okay, at least my legs don't feel as weak but I wake up all night or don't sleep at all. I have also tried EFT, my mother turned me on to that but unfortunately it does not help my chronic insomnia. Since changing my diet by avoiding the foods my body showed an intolerance to my handwriting is more legible. I would like to start the electrical stimulation on my right hand to see if more of the numbness goes away. Only one way to find out is my thinking, I would also like to use the ES for my legs and maybe even bladder. This is a busy doctor week for me. Last Thursday I had another blood test to check my thyroid levels and this time Vitamin D levels were added, I've never had my D levels checked before. Tuesday I go to Dr. Paloyan's office to have an ultrasound on my thyroid. Wednesday I go to check out another Neurologist Dr. Bajwa. He sounds good from what I have read and he was recommended by Dr. Ahmed who I really like. Then on Thursday I see Dr. Ahmed. I have no health insurance as I know of many of my other MS compadres do not either so I have to find a doc who takes Medicare. My friend Fran was able to have the CCSVI treatment performed, she says it has helped her with OAB, Insomnia and eyesight. She was told to be patient for further healing. Patience is required for these dietary changes as well, it is very slow. Maybe when it works it's way to Chicago and if I have the money I might try it. I am so thrilled to have heard about Dr. Terry Wahls, an MD who had MS but after using diet and electrical stimulation for 4 years is fine. I may try EFT again and see what happens. I will also be interested to hear what the new Neurologist I will be trying out has to say about this hideous insomnia and any solutions. I will absolutely be telling him about Dr. Wahls and the diet aspect. It appears to me, patience seems to be the main key.

11-05-10     I went to my new DO yesterday, she was great! She paid attention to me and actually looked at me and not staring at the computer like Dr. Zhang did, that was annoying.  Dr. Ahmed was great, she actually was interested in the information I gave her about the blood test I had that showed my food intolerances, she is a keeper!  She does still want me to find a Neuro, which I will  call on Monday to make an appointment. I will be having testing done for my thyroid on the 16th where they will do an ultrasound to my thyroid.  It will be so nice to get that taken care of, It is so frustrating to be gaining weight when I'm so conscious about the foods I eat, it makes no sense except that my thyroid is messed up.  I will need to get another blood test of course, which is no big deal for me. I guess things could be worse. I'm so tired still, sleeping is still a big problem.  My thyroid may have something to do with this except that I have been having problems with sleep since '98. I will soon be adding the electrical stimulation part of the way Dr. Wahls cured here MS, so hopefully that will help these other nagging symptoms. It took her 4 years so I'm sure this will also take much patience. I also have heard from my friend Fran who recently had this CCSVI treatment performed and so far it is slowly helping her with sleep and her drop foot that she has had for years. I hope this continues to help her symptoms, she realizes patience is going to be key.  My friend Connie is also going to have this done, (they both have gone to Atlanta).  I have zero health insurance and am unsure if Medicare will pay for this so I will just stick to my dietary changes and start adding the electrical stimulation. I have no idea if the ES will help with my chronic insomnia or OAB, but I would like to find out!  It will be an interesting journey that is for sure. I wish this could all happen faster, but that is probably not so logical.  My brain does not work so well when I can't sleep so I am slow, slow, slow updating my website especially the Turkey Bowl page which will happen the day after Thanksgiving!  I really hope that my ability to sleep will happen soon, that is by far my worst symptom, but I guess my OAB plays a role with sleep.  I take RX's for sleep but they don't help a lot, I probably should try an RX for OAB, but they are so expensive and I don't even know if they will help. If I had insurance it would be no big deal, but I don't and it is a big deal. I will ask Dr. Ahmed if she has any samples or can write a script for 1 pill. Such a P.I.T.A.   In a sick kind of way this has been an interesting MS journey, but I'll be glad when this journey concludes! Never give up! ~ Lisa

October

10-24-10      I was not real impressed at my appointment and will not be going back. My mom & AJ felt the same way especially when she suggested I get a walker! My legs are still weak but the recent cool weather is helping that quite a bit. I still have hypothyroid, that is sucking he energy out of me more than anything. I have just recently read some info on diet and hypothyroid and since diet has been my main MS treatment after having that blood test in March '09, I feel I need to step up the pace. I just read a link about Hypothyroid and treatment... which is diet related. http://www.hypothyroidism-breakthrough.com/?hop=edk8167

I found this idea pretty plausible, not easy but since I'm already trying to avoid the 29 foods that test showed I have an intolerance to. My worst MS problem I feel at the moment is not being able to fall asleep and stay that way, I'm in the bathroom to urinate every 2 hours day and night...I'm so tired! Though last night I slept better, I did more physical exercise yesterday that probably played a role. This just takes so long to start feeling better, such a P.I.T.A. Though I believe more and more that diet is the key to curing MS, just as Dr. Wahls is showing, I like that an actual MD with MS is chiming in! I'm sure many Neuros don't want to believe that diet is the clause, I never did because the Neuros I went to said diet has nothing to do with it. I would love to show them my blood test results. Oh well, it will probably be decades before more doc's come to the conclusion that diet is the reason for MS. This is the most difficult treatment I have ever used but am finally getting used to it after 19 months, but now seeing that I will have to be much more strict with my hypothyroid dx. For me, I know once I am able to sleep better on a daily basis that I will be able to be more strict with myself. This really is the most difficult treatment I have ever used. Oh well, as my ability to sleep improves I will have more energy to cook a variety of foods. Exhausting, but I still will never give up! ~ Lisa

10-16-10     I went to my appointment with Dr. Zhang, though the date that was given to me was wrong, it was the 14th. I was a little disappointed because she was asking me about if I took any of the ABC drugs and appeared to be surprised I did not keep taking them. I told her I used Betaseron briefly but stopped taking it because when I first used it, prior to the injection I was able to walk and after the injection I could not budge my legs...so I said screw that crap! AJ remembers that day because he witnessed how prior to the injecting I could walk, then after the injection I could not budge my legs.  I realized I did not take enough Tylenol before the injection. But I'm thinking why should I need to take another medication to prevent a 103° fever??? Ridiculous! I also used Copaxone for a little over a year until I kept having exacerbations, I call that not working! Now that the weather is cooler I am feeling I can probably exercise a bit more and not have an exacerbation, so I am adding that today. I'm still greatly fatigued from having Hypothyroid disease so I know I must be careful not to over do it or I will probably pay the price with an exacerbation. Because my legs are not as strong as they could be since the summer heat brought on a bit of an exacerbation my legs need more exercise to get them stronger. I use a cane when I walk and it is obvious that my legs are still a bit weak from the summer heat. The doctor had me walk without my cane and of course my walking was pretty bad, but for me I know it is because I need to stick to a serious exercise routine. My next appointment is for November 11th, I would like to show her that I do not need a walker! She suggested I get one, that did not go over real well with me, my mom and son were with me and new I would be speaking up about that with the doctor! I'm just not a good quitter. I told her about Dr. Wahls, an actual MD who has cured herself of SPMS through diet an electrical stimulation. She did not seem too impressed with me saying that the only treatment I am using is simply not eating the foods that blood test that showed my food intolerances (I gave her a copy).  I showed her a copy I made from Dr. Wahls site where she explains about how she used diet & electrical stimulation. Hopefully she will order a copy of her book so she can read about her actual experiences. Maybe coming from an actual MD, she will believe that diet does play a role in MS. We shall see, I'm not ready to give up on Dr. Zhang yet. However what I would like to try in place of electrical stimulation is Hyper baric oxygen treatments. I'm sure I have mentioned it in my website before but I will babble a little more about that. Years ago I remember reading about how 2 MS patients from England had gone out of the country and had stem cell treatment, which cured their OAB and chronic insomnia! I found that really interesting and wished I were them! I cannot afford to have real stem cell treatment, but I remember reading information from Neurologist David Perlmutter about how HBOT treatment "hyperbaric oxygen treatments increases by 800% the number of stem cells circulating in a patient’s body.".  I personally would be interested in trying this treatment and maybe both electrical stim and hbot. ??? I already know for myself that dietary changes take time to feel changes I would presume that both hbot and electrical stim take time too. Geez this sure takes a long time, but I just think it would be interesting to find out what changes will happen for me. I hate waiting but I can see change cannot happen without time. Stay tuned and never give up! ~ Lisa

10-02-10    Thank goodness I will be going to see my new Neurologist on the 12th! I am hoping Dr. Zhang will give me a prescription for my OAB, that is the main reason I sleep so badly. I'm always waking up to urinate every hour or two, it's like not sleeping at all! Very frustrating, I'm so tired and my right leg feels very weak from this lack of sleep.  I am also looking into how Dr. Wahl cured herself from MS through diet and electrical stimulation. My right leg might be helped by this treatment. ? Years ago when I was about 22 I had drop foot to my right foot, but it did go away.  http://www.unitedspinal.org/msscene/2008/08/29/functional-electrical-stimulation-and-multiple-sclerosis-seperating-fact-from-fiction/  I am quite interested in this electrical stimulation treatment that Dr. Wahl's used to treat her MS. Though it looks to me like her MS is different from mine in some ways, but I have changed my eating habits after I found out about my food intolerances. From reading Dr. Wahl's links above, it does not look as if she was tested for food intolerances. She is obviously much wiser than I, but for now I will just stick with staying away from the foods my body show an intolerance to. I will update more once I can sleep without getting up to go to the bathroom so much. I'm hoping to have a prescription for that on the 12th, then my brain will function much better! Dr. Wahl also has a Facebook page. http://www.facebook.com/#!/Dr.Terry.Wahls   Have a great weekend! ~ Lisa

September

09-18-10    Well I will not be getting prednisone so I guess I will have to wait until the cool weather starts to really help my legs get stronger. I trust Dr. Ayre so much I've gone to him for many years and understand why he does not feel comfortable ordering more steroids for me, I respect him for that. He is concerned more steroids could kill me, I disagree but then again I am not a doctor. I have been using prednisone since 1984 after my first experience with vertigo. That neurologist hospitalized me for 6 days and ordered ACTH intravenous treatment, after that the Neuro have me 80mg prednisone, then weaning off each week by 20 mg from there. I personally feel if I were weaned off properly my right leg would be fine, oh well. I will also be adding extra Omega 3 fish oil since I read that that is a great anti-inflammatory. I guess I will just have to stick to my dietary changes since that I have noticed is helping with getting rid of my brain fog, I really like being able to carry on a conversation without endlessly looking for words and feeling like an idiot! I do hope one day soon the SF1019 vaccine will be approved by the FDA, that worked for me much like prednisone but so moon face, no bloating at all! Being able to sleep would be nice as well but I'm out of luck there as well. On the diet aspect I just learned about something that may help my over active bladder, here is a link if you would like to check it out for yourself. http://www.oab-cured-forever.com/?gclid=CI7G9P-okaQCFdj75wodXzBNJA  It has to do with sodium intake and not just not adding salt to your foods, I personally never do, I don't like the taste of salt. However salt is in just about every manufactured food so she tells about another treatment that will help in repairing the damage already done. I will add that to my new way of eating and hopefully in a couple weeks my bladder will calm down so I can get some sleep and not wake up every couple hours to urinate. It's like not sleeping at all. I did find a doctor for my Hypothyroid and I also found a Neurologist who actually lives in my town and is a woman, I have never gone to a woman Neuro before, it also sounds like she believes in diet helping MS unlike he last 2 Neuros I have gone to. A bit more waiting, but I am hopeful just really tired. Have a great weekend! ~ Lisa

09-10-10    I do forget how when the weather changes that for me (and of course many other MS patients) the cold can be just as bad as the heat. I'm experiencing that today. I wish I had prednisone! It's early in the new season but having the heat turned on would be helpful, I will have that taken care of today. I have decided to go ahead and make an appointment with the doc for my thyroid first. I remembered that the doc I was seeing was a bit confused with my blood tests, and at that time I was using prednisone. I was thinking that right now I have no prednisone running through my veins and this might be a good time to have a new blood test to compare to the other ones. I really want to get my thyroid thing taken care of asap, then I will go to the Neuro since she is out even in the country right now. I wish this could be easier but I guess I'll go with the saying "Good things come to those who wait". It has been a long wait but hopefully soon things will get much better. I can only hope. I admit to be tired of waiting but quitting is not an option for me. I'm tired so I will now try to nap! Never give up! ~ Lisa

09-09-10    Well the weather here in IL is much cooler, yahoo! However the huge stresses I have been under are doing quite the number on my leg strength. Though I actually feel pretty good today, more energy. This new neurologist will be back in the country on the 14th so I will make an appointment asap. I hope she will agree to 40 mg prednisone then 20, 10 & 0! I know from my decades of using prednisone that this will help my legs feel stronger. The earliest appt I can get with the doctor for my thyroid is in December!!! That sucks! I just searched the internet and think I found a doctor who can help with my thyroid, who has a practice right in Lisle. It is a group of women doctors, kinda cool! The rebel in me says go for it!  I should probably wait until I see this new Neurologist, one thing at a time. I need my legs to be working better in order to find a doc to help with my thyroid. Life is a bit of a P.I.T.A. lately but I would still like to see how much better I can get concerning the MS through diet alone. I certainly do not expect to become good as new I would just like to see for myself over the next 10 + years just what else can recover. Only one way to find out! Never give up! ~ Lisa

09-07-10      I am not doing so great between no prednisone so walking is very difficult. I will be going to a real Neurologist soon, a new one who is in my town and a woman! I need to make an appointment but am just too fatigued today with the Hypothyroid and being yanked off he prednisone. Not enough oomph. Wish me luck! ~ Lisa

09-03-10     I do detest summer! I am also very disappointed in my doctors because they will not let me finish my usual routine of summer and prednisone. The new doc is very uncomfortable with how the steroids make me look, like a bloated mass. I don't much like it either but when I was using them I was able to walk pretty well, not now. Sucks! At least at the moment the weather has cooled down substantially, but since the heat has done it's damage it will take time to recover as it always does. So I will be trying to search for a Neurologist in my area who actually believes that diet does make a difference. Since that blood and hair analysis I had one shows for a fact that there are many foods I have intolerance to.  This is so frustrating but all I can do is press on and hope for the best. I wish that vaccine would be FDA approved quickly, I also know how well that worked for me but I'm sure that will also take a lot of time. The Temazepam is still helping in the sleep department, that is awesome sleep has often been such a problem for 10 years. I'm tired now and will probably be able to take a nap later. Well, the prednisone bloat is going away but I would use it again in a heartbeat because I know how it helps me to walk. I am able to walk to use the toilet, just not longer distances. It would be interesting if I had to get out of the house quickly, hopefully I will not. I am still not needing to take Prozac, that is great no weepiness. I love that as does my son! My hands and fingers are still waking up, that is such an awesome feeling. When I think about it as I sit her at the computer it appears my butt and thighs are waking up! I had an odd feeling a few days ago where I felt clicking in my left ear, I guess I'll just have to pay attention to my body and see if something become of that. That is what I am finding so interesting, when I notice certain odd sensations like my ear clicking and pay attention to my body to see what that might mean. Never ever give up! Have a great weekend! ~ Lisa

August

08-27-10   The heat did kick my butt big time when it got into the 90's for a few days! I hate summer! It has cooled off substantially so I am able to wean down to 60 mg prednisone, next will be 40 mg, for a week then 20, then 10 then done! I look like a blow fish, though I should not complain because the steroids do help my legs stay strong to a good degree. This is where I believe that SF1019 vaccine will be helpful to not just MS patients but other maladies where high dose prednisone is the only answer. I know it makes me sad to see children who so obviously are on a high dose steroid regimen. Sleeping is still pretty crappy probably because of the steroids. I again can be my own worst enemy by pushing it to the limit. A couple days ago I thought I would make sure all the dishes were done because I have all this energy I am not yet used to, my legs were so weak, yet I pushed it. My legs were shot so I really had to depend on my WC a lot and nearly falling several times...big duh! My son has helped me in saving me from myself! My legs are still weak today but nothing like yesterday, I think I have learned my lesson. I have decided to have the full food intolerance hair analysis performed asap simply because of the amount of foods that are tested. This link shows what exactly is tested for; list of items we test. I only had the partial test done but it showed that Lactose intolerance and some surprising intolerances that the blood test did not show, cauliflower which does make my stomach feel a bit ill after eating it. Also, black tea! I understand that food intolerances can change, maybe the black tea showed up as a positive because I have been drinking it so much of it. ? Oats was shown in the blood test as an intolerance as well as tuna and sesame seed. That is why I would like to have the full test. Lettuce showed up in the blood test but the hair analysis tests for 8 different lettuces, I would like to see that. I am starting to get tired so I will take a break, hope for a good nights sleep and get things up and running better tomorrow. Sorry if some of my links are messed up, I will fix them tomorrow. Have a great weekend! ~ Lisa

08-06-10  So far so good with sleeping. It is not to horrifically hot here in Lisle so the heat has not yet kicked my butt. I am hedging the bet though by taking prednisone, turmeric and drinking black tea. The prednisone bloats me up, I would take that vaccine if it were FDA approved because it worked like steroids yet no bloating or extra insomnia. I'll wait, I'm not going anywhere. This food intolerance stuff is so slow but I am thrilled that I found out, I cannot believe the amount of energy I have. I'm not delusional I know I have a long way to go and certainly will not be surprised if my balance never fully returns. However I am finding this so fascinating to experience and would like to see how I am doing in the next 16 months. I have not driven a car in 3 years and at his point would feel comfortable behind the wheel which I know my family appreciates... :-)  I don't care about that at the moment, I'm so excited to be able to walk within the house with my cane and sometimes without it. I am cautious though to not over do it, I use my manual wheelchair if I need to get around quickly. I took off the leg rests and just scoot around or wheelchair walk. I'm doing things like picking up the dog hair that Daisey leaves behind, wheeling into the kitchen locking the chair and standing up and doing dishes. Never did I think I would ever be so excited about cleaning, even cleaning the bathroom, but now that I have this energy I'm so hopeful for the future. The wheelchair walking has really exercised the muscles in my glutes and calves, it's kinda fun! Have a great weekend! ~ Lisa

08-04-10  Well to my delight I slept very well after taking 2 Temazepam at 10pm, woke up 4 hours later to go to the bathroom and decided at that time I would take 1 more Temazepam, that was the best nights sleep I have had in years. I have even had the energy to wash the dishes and do 2 loads of laundry. I have so far taken 10mg prednisone since the summer heat isn't going away anytime soon. Yesterday I ended up taking a total of 40 mg, I remember even last year taking 60 mg. I guess only time will tell, but I still believe since avoiding those foods that blood test showed the 29 foods I have an intolerance to for the past 16 months that that plays a role. I certainly do not begrudge those that are having success with the CCSVI treatment that is awesome, I just know for myself I cannot possibly afford to be tested let alone have the treatment. So since I have been having so much success by not eating those foods I showed an intolerance to I feel that is my only option at the moment. I should be getting my food intolerance hair analysis results back by next week, in my mind I just like to have these facts since blood cannot lie, nor can DNA. This is the most difficult treatment I have ever used, it took 16 months to notice these unmistakable changes, especially tons of energy just this past week. It also appears this is a treatment that will need to be used for ever. I'm okay with that now that I can see the differences. I have a long way to go and would not be surprised if my balance never completely returns, but I'd like to find out. Never give up! ~Lisa

08-03-10   Last night was another terrible night of sleep, I lay there all night and never fell asleep. So I decided to go to the couch at 5am and thought what the heck I'll take 2 Temazepam and see if it really helps me sleep....I slept for 4 hours in a row! So tonight I will take 2 Temazepam before bed and hopefully the sleep will continue. I have been thinking since I am noticing so many great changes with only diet, if I could just sleep things would be much better. Well, hopefully the sleep will continue and I can start noticing more and more changes for the better. I feel more hopeful than ever, I'm still amazed.

Never give up! ~ Lisa

08-02-10   As always sleep is a nasty problem for me, last night I took my usual sleep meds Temazepam, over-the-counter sleep aide, calcium and vitamin d. I finally went to bed at 11pm and could never fall asleep. Very frustrating, so I just decided since I was just laying there to do some visualization, I figured it cannot hurt. It did not lead me into dreamland though. So tonight I will not take anything accept calcium and vitamin d. I find it so interesting to try these different things out for myself even though it is not a true scientific experiment, just my subjective information as I see it. I try to pay attention to my symptoms and write them down as I notice any changes, that is part of why I write this down on my website. So on a calendar in the computer room I make little notes if I notice something seems different. I started putting a asterisks on the page when I was starting to have this odd but consistent "something seems different" sensation. I'm glad I did because I would have never remembered that on my own. I noted that on July 21st to today. I have also noticed some physical changes. When I got in the shower this morning it again felt different but as I am sitting in my shower chair I felt very steady, not at all dizzy. I remember when I would shave my arm pits and turn my head that would often make me feel unsteady, or leaning over to wash my feet that would also make me feel a bit woozy. Neither of those things made me dizzy at all it feels so odd but I like it and feel this could be showing that maybe there is some healing going on in my cerebellum.? I guess only time and MRI's will be able to show if this is really happening. I also noticed today that my hand writing is much more legible my son could actually read my grocery list. The other thing I have been doing on purpose is not adding any extra exercise routines, I want to see if I notice my muscles getting stronger with just my daily tasks. So I do notice muscle soreness in my buttocks, calves, and back of thighs. Maybe this is why moving around in the shower or just moving from the WC to the couch feels smoother. It's such an unusual feeling but I hope it continues. I have never read anything before about what I am experiencing, but really hope that this removal of my food intolerances is playing a role. Could Dr. Swank been on the right track? Still some of the foods allowed by the Swank diet are foods my blood test showed I should not eat, I find that so interesting. For myself since I know my blood test results showed these intolerances, I will continue to stay away from those foods. I will be really interested to see the results of my hair analysis just to try to back up the blood test results, it should show the same results. I do know many MS friends who want nothing to do with finding out their results. I can certainly understand that since there is not a lot of info on food intolerances and MS especially from the Neurological community, and my website is just that, just a website by an MS patient. I will be the first one to say that a patient should run this info by their physician before having this hair analysis done. My family doctor is in agreement with this blood test I have already had. At some point I would like to try to find a Neurolgist who feels this hair analysis test for food intolerances may truly help their MS patents. The only Neurologist I have read about that does believe that food plays a role in MS is Dr. David Perlmutter, though I do not believe anything was mentioned about food intolerances testing. Maybe you have a doctor who is interested in the MS and diet connection. Please give them the information at my site so they can investigate for themselves. Blood and DNA testing seems pretty compelling to me, maybe it will be to them as well.

Never give up! ~ Lisa

July  

07-30-10  My sleeping is still pretty crappy but one thing I am noticing is that usually when I get so little sleep I cry at the slightest thing, like stupid commercial or something like that. That is why I would use Prozac, but I have not used it for 3 days and I am not weepy at all. ? I  consider that one of those "something feels different" feelings. Of course this is just my opinion, but I will pay attention to that and see if it stays the same over time. I am still using my cane but use the WC if I feel too unsteady the heat is starting to get to me, but I have no vertigo at the moment and am using only 20-40mg prednisone daily. Using none would be better, I hate the Prednisone bloat! I know I am fortunate that steroids work for me, I know many who have no response at all with them. I am still sticking to avoiding the foods my blood test showed I have an intolerance to, that I will never change. I will have my son send my hair test out this weekend, it goes to the UK then they will email the results to me when they have them. I am excited to somewhat compare the results. I have a bit more detail about that on my index page if you would like to read it. I guess only time will tell but I feel I am having some results, I guess I should think about having an MRI and maybe another one 6 months later to see if there are differences in lesions.? I will consult my GP about that. Have a great weekend! Never Give up! ~ Lisa

07-27-10   I like to try to write down changes I notice as they happen. I have been sleeping extra horrible the last few days but was pleasantly surprised on how it felt smoother moving around when I got in the shower this morning. I just once again had that feeling that something was different but not able to put my finger on exactly what feels different. My feet seem to feel the cold tile beneath my feet even better, maybe that is why I have that something feels different feeling. ?  Like I just wrote, I slept horrible maybe 3 hours of sleep but I feel great lots of energy...strange but I really like it! Food really is appearing to me to be my best medicine.  I've cut down on the prednisone but it is a bit cooler today. I'm almost excited for the 90's! I guess I am just trying to pay attention to any changes to my body that the heat brings. I find it kinda fun to be my own little experiment, kinda crazy but I feel the I am the only person that knows how my body reacts. I would one day like to find out if I have CCSVI, but that will probably be a few years off so I will stick with the one treatment that really seems to be working...not eating my food intolerances. I will be sending out my hair analysis today. That will also be interesting to somewhat try to compare the results. I am also so grateful to Westmont Pharmacy here in Illinois! I just don't think about my wheelchair needing to be serviced every once in a while, I waited way too long! It was almost comical for a while because it was squeaking and would make the cat nuts! But the squeaking was getting worse and worse so my son took it to Westmont Pharmacy yesterday and they called a short time ago and said it is moving perfectly, so $51.53 later my son will pick it up today! I should have looked at the receipt before I spoke, that was the estimate, it came out to $126.16 but it is like new now! They were so helpful! Other establishments were very unhelpful, I hope one day to not ever need the wheelchair but that is still years away I would think. I will never give up but will try to be as logical as possible. Stay cool! ~ Lisa

07-24-10  Now I am using steroids, the stress of having to file for bankruptcy because my ex had to move with his wife to NC and leave his job. No job no $800 monthly alimony = huge stress + summer heat = MS symptoms (weak legs).  :(    I still believe diet can make a difference since I know of other MS patients who have cured their symptoms through diet alone, though it takes years. It has been 16 months since I stopped eating the 29 foods my blood tested positive to as an intolerance. This is not a quick remedy that is for sure. I also believe blood cannot lie and am also waiting for my DNA hair analysis results, just to compare as much as possible. I also would not be surprised if I have this CCSVI problem because I have this odd sensation sometimes at the base of my neck, it kinda feels like crunching for a second or two then goes away. I notice this a few times a day. I also know that procedure is not covered by Medicare and I have no health insurance and no extra money to go over seas to have this done, I will need to wait until it is available in Illinois. I tell ya in the meantime if I was able to use that SF1019 vaccine again I would use it in a heartbeat because it really helped a lot! I had tons of energy and was walking around great even in the summer heat.  But it has not yet been FDA approved, hopefully the FDA will move it quicker and also move the CCSVI treatment quicker. Until then I will stick with staying away from the foods my body shows an intolerance to at least that is a fact for me.

I will never give up! ~ Lisa

07-17-10  I am still not using any steroids...unbelievable! I am just a little unsteady after I sit up from a laying down position but that quickly goes away! Freaky but I like it! I will be very excited once I have this hair strand food intolerance test done to compare to a degree to the blood test I had in '09. I was told by Andy at Test your intolerances USA; "Firstly, depending how long it is since you received your previous test, intolerances do change, unlike allergies. This depends on your immunity level etc.  Secondly it is now finally being proven that samples from a hair sample are much more accurate due to the length of time a hair sample remain live with full data.  A blood sample commences to die the moment it is removed from the body and is normally dead within 2 hours.  A hair sample is estimated to have 3 months of live data for every 1/2 inch of hair. When sampling body hair it is estimated even the shortest hair has 12 months of data. It is for this reason that hair sampling is now the preferred method for drug and alcohol sampling used by the courts." It will be so interesting to see these results! The link is above if you would like to read about it. Since the CCSVI treatment is so new and it will take time to find out if every MS patient has this venous problem it seems as with everything else it will just take time. I have written somewhere in here that I have this odd "crunching" feeling at the back of my neck at the base of my skull and would be very curious to have the test that checks for CCSVI. That sensation is not consistent, it only lasts for a second or two but it is very noticeable to me. If I have that too it would not surprise me but it will be quite some time before I can find that out, so in the meantime I will continue with staying away from the foods my blood test showed for a fact that I have an intolerance to. I am finding this disease highly annoying but it is kind of fascinating. I so wish my friend Scot had lived to see this day, he died way too young not even 40. As he often called it Sucky Disease...sounds right to me. It will be really interesting to see how things go wit the CCSVI theory, but I still then find it interesting that my blood test showed 29 foods as an intolerance to me and I am truly getting better and I am only using food. I know many of us have read about other MS patients who changed their diets and claim cure. I am certainly believing it more since I had a blood test that for a fact showed the foods I have an intolerance to. I am really excited to have the hair strand test done especially since it tests for nearly 300 foods! My handwriting is even more legible and it's summer! Never give up! ~ Lisa

07-06-10  Well to my great surprise I have not needed prednisone anymore. I woke up a couple days ago, looked at my digital alarm clock and it was not spinning, I thought I was nuts. The next day I woke up again and my alarm was not spinning. I was a bit dizzy but no vertigo that was really strange especially since I stopped using prednisone, just to see what would happen. So far so good, I also stopped using B1 & liver extract which in the past seemed to help quell that symptom. I like to push the envelope sometimes just to see what happens. The other thing I have been noticing is my brain fog is practically non existent and my fingers & toes are waking up, something I have not experienced since 1984! I still use my manual wheelchair when it is dark out since my balance is not so good, but one subtle thing I have been noticing and will keep paying attention to is when I stand up to transfer from my chair to the couch or vice versa, it feels so effortless, it seems so unreal! My handwriting is better as well, much more legible, AJ can read my grocery list now! :)  I know I have a long way to go but now after 15 months of avoiding he foods my body has an intolerance to, I will definitely stay the course. I will not rule out CCSVI as a possible part of the problem simply because I sometimes feel a sensation at the base of my neck that feel sort of like "crunching" ? I would certainly consider it once it is available in Illinois, if I can afford it. For the meantime I will stick with what I can afford, food. I know there are a lot of MS patients who do not believe diet can truly help, I was one of those people and I am very stubborn, I wanted to see proof since my all knowing neurologists told me diet does not help MS, I would love for them to then explain my blood test results. That will not likely happen that is why I have found a doctor who does believe diet can help. I just recently read about a food allergy test that is from a hair sample $80. If you would lie to read more, here is a link. http://www.testyourintoleranceusa.com/  It is not as expensive as the blood test I had years back, but for me I really felt I needed proof. I guess only time will tell.

Never give up! ~ Lisa

7-02-10   The black tea does seem to help a bit however I started feeling the need to try some prednisone. So I started with just one on Thursday but was beginning to "spin" a bit more so I added another 10mg, by 3pm I was up to 40 mg! I hate the steroid bloat but they do seem to help the vertigo. Then by 8 I realized I had not used my B1 & liver extract injections for a couple days! big duh! So I injected and that seemed to help even more...how could I forget that? Too much stress I guess. I woke up this morning with hardly any spinning unless I tilt my head. I have taken 20 mg prednisone (out of paranoia) today, I still feel a little dizzy but I don't spin unless I tilt my head, so I don't tilt my head! Genius huh? LOL  My mom was just over and she remembered as do I that when the heat would kick my butt in years past, my legs would always become really weak and walking with my cane was not easy at all, I certainly could not have walked with my cane into the computer room as I have been doing for days! Maybe it is just a coincidence but I really do not think so, the only difference between prior years and now is my dietary changes. As I've said before I'm not 100% strict but probably 95%, I even ate some pizza a few days ago and everything in pizza is a food intolerance for me; wheat, yeast, tomato and cheese. Throughout my life I have always eaten cottage cheese just assuming it was good for me, now I know better. I always ate oatmeal and wheat bread, lots of foods like that. I wish there was a time machine, it would be interesting to see how my life with MS could have been different. But since that is fantasy I can only go on and stick to reality and my new way of eating. This next week will be quite stressful, I will be filing for bankruptcy on Friday so I need to get all my papers in order. It will be nice when it is over with!

Stay cool and have a great Fourth of July! ~ Lisa

June

06-27-10    This past Wednesday it was quite hot and as usual it set off my usual vertigo! I hate that feeling! I was reading that drinking black tea can help that and I had just bought some a while back so I brewed some up and it seemed like it did help some. When I lay on either my right or left side and open my eyes the room starts spinning again but eventually it stops until I sit up when the spinning begins again then it stops after a few minutes. I was Googling again and  found a product called MotionEase that it rubbed on the soft area on the head behind the ear.  I have used it several times now, it seems to work a little bit but I still feel a bit dizzy. The next treatment I would like to try since I still have some money left from that touch football game my brother Brian and friends play in my honor is to have some HBOT treatments since I read information from a Neurologist David Perlmutter about how HBOT can get stem cells that are already in the body to circulate by about 800%. Also what I would like to do first is to have an MRI since I have not had one in 10 years! If possible I think it would be interesting to have a few more MRI's done after having the HBOT treatments to see it there is a difference in the lesions in my brain in my cerebellum. Just a thought I will run by my doc. I find this disease really annoying but it is also sort of fascinating with how food really seems to be making a difference. I of course don't feel I will probably ever become all better, there are a lot of lesions upstairs LOL! If I could go back in time and now then what I know now about my blood test maybe I would have been able to stop the progression, I will never know that for sure but I will stick to staying away from those 29 foods my blood tested positive to as food intolerances. It certainly cannot hurt and likely will help. Never give up! ~ Lisa

06-22-10    I recently had a blood test done to check for Hypothyroid because I have been extra, extra fatigued in the past few months plus I was gaining weight even though I have been so diligent about my diet since I had that Human blood print blood test I go on and on about. My blood did show my T-3 hormone levels were unusually low so my doc ordered a compounded medication which I have been taking for about a week, my energy level is so much better I can't believe it! I have also lost 3 pounds:)!!!

I will continue to stay with my eating plan especially since I have been under a lot of stress and the summer heat is kicking in, yet I have not been using anything but food to treat my MS. I do have B1 & liver extract injections available should my MS start to kick in, that has worked for me in the past. I would have never believed this was truly possible but it has been a little over one year since I stopped eating those foods my blood showed I have an intolerance to. It took quite some time and of course I am not all better, my balance is still very bad but just this morning I got up and walked to the living room with no cane. I did of course need to touch the walls to get around and my low back is now a bit sore so I think I should stick to using my cane and not over do it. I feel so great! The next treatment I would like to try is HBOT. I wrote about that back in May, I would like to see if I can notice any  differences in my balance after some HBOT treatments. I will need to rely on the Turkey Bowl money that my brother Brian & friends raise in my honor or win the lottery which I rarely play because that is not likely. I know I am so lucky to have a wonderful group of guys and gals raise money in my honor so that I am able to try out some of these odd treatments that are no covered by Medicare.  Never give up! ~ Lisa

  HAWKS WIN!!! HAWKS WIN!!! HAWKS WIN!!!

May  

05-29-10   I am so excited about tonight's Chicago Blackhawks game!!! It's a long time coming! MS wise I am noticing very good subtle changes with my memory, I am walking very well and sometimes I forget to use my cane! I've done that a couple times and ended up calling for my son when I realized I can't walk any further. Kinda neat in an odd sort of way. It is getting pretty hot around here in the upper 80's so I do not want to push it too much. However when I think about it usually once the heat hits me the right side of my body will get weak and I will need steroids. So far I do not need them. My legs feel strong, my brain seems more clear along with my memory. Of course the summer heat has just begun so we'll see how that goes. I am using Turmeric which is a natural type of anti-inflammatory supplement. I am of course still sticking to my diet of avoiding the foods my Human blood print blood test showed I have an intolerance to. I still plan on trying out the HBOT to see if that can help my older symptoms like balance. I'm sure I'm forgetting something, but I'm just so excited about tonight's game! Have a great Holiday weekend! ~Lisa      Go Blackhawks!

05-14-10   So far so good though I do realize I'm trying so many different treatments at once and my beliefs are subjective. However, I plan on having the doctor at the HBOT facility do some balance tests that I know I cannot do successfully at the moment, for many years actually. I will also have my son AJ record me as I perform, well ... try to perform standing with my feet together and eyes closed to see how many seconds it takes before I have to open my eyes. By the age of 21 in the fall I had my first biggest exacerbation that left me with vertigo, and my first hospitalization, and the lovely introduction to ACTH! Let the bloating begin! I am fortunate I guess in that steroids have always, and still do help in inflammation reduction. I think I know more people for who the steroids do squat, nada, nothing. My brain still gets easily distracted like now, anyway I will have my son tape me standing with eyes closed, and do that every week to see if I notice a difference, and to compare each week or month.? That is all I can think of as a comparison since I will not be able to have regular MRI's.  If you have any other suggestions please email them to me! Have a great weekend and never give up! ~ Lisa

05-07-10   I will be starting again with the LDN this week. I used it a few years ago but at 3mg, I really did not notice much difference I'm hoping the higher dose will show some results. Back the first time I used LDN I had not had the blood test that showed my food intolerances, that I have noticed has made a difference. I also have forgotten to mention that I have been using B1 & liver extract injections for several years. It seemed helpful to a certain degree but the differences I have noticed, more energy seems to have happened since I stopped eating the foods my blood showed I have an intolerance to. I'm sure it will take studies to show that this could really be a part of this disease. I may at some point look into the CCSVI, that would be interesting to know. I personally also believe that stem cells may help to re-myelinate the scarred areas of the brain. I guess only time will tell. I at some point would like to have HBOT since from what I have read, it can according to neurologist, David Perlmutter; "hyperbaric oxygen treatments increases by 800% the number of stem cells circulating in a patient’s body."

Here is the full link; http://www.perlhealth.com/perlmutter-hyperberic-center/stem-cell-study

I think that could be interesting. Never give up! ~ Lisa

05-01-10  Dr. Ayre has retired so I went to see his partner Dr. Malik since I had not yet met him. I like him very much and will start using the LDN again once it gets here. I have been using B1 & liver extract IM injections for years which is somewhat helpful especially during the summer heat but did not help nearly as much as that SF1019 vaccine that I used in '07-'08 for 13 months, it helped with tolerating the heat and gave me gobs of energy, something I lack now. I personally would use it again in a heartbeat given the chance, hopefully it will be FDA approved soon. In the mean time I will stick with staying away from those foods my blood tested positive to as food intolerances. Maybe the LDN will give me some energy, I guess only time will tell. Cya~ Lisa

April  

04-23-10  I was thinking I might put my personal type of "game plan" here. I'm just winging it as the years go by but feel I am learning. It at least appears to me that the MS patients who have changed their diets are the ones who are doing better. Though it seems to be especially true for the MS patients who are much earlier on than I am. I think it makes sense, the earlier the better. Less lesions and all.  I never believed diet really would help mostly because my "all knowing" Neurologist told me that diet has nothing to do with MS. I wonder what he might say if I showed him a blood test I had that showed for a fact that I do have 29 food intolerances? I am very glad I had that blood test done at least I have it in black ands white. I really wish this test was around when I was 13 when my optic neuritis reared it's ugly head for the first time. I simply did not believe the Swank diet would really help and as a teen I surely was not going to give up fast food! I believe if I had his blood evidence when I was 13 it certainly would have been a bit more difficult for me to not believe that blood test. Funny though, still some of the foods on the Swank diet are foods my blood test shows I need to avoid. Obviously that was not meant to be, but now that I know I have stopped eating those foods. I don't think I am delusional, the damage has been done I have no balance and I may never get it back. In fact that seems pretty likely that I will not. I am just a high school graduate, but unless stem cells can help re-myelinate my brain it does not seem very likely. Since I am not a rich person stem cells seems pretty unlikely. With that technology in it's infancy that also appears to me to be pretty risky especially financially and mentally if it does not help. Personally it does not make sense to me to expect an instant full recovery with any treatment including stem cells. I am fortunate in that I have always been able to walk to a certain degree, even just a sliding shuffle step. I would think my lesions are in different places than those who have not walked for years, but I'm certainly no doctor so that is just a guess. I know of some who have had stem cells, some have been helped and some who were not helped at all, just much poorer. It is a huge decision and I personally feel that if a patient decides to go through with stem cell treatment the doctor performing the treatment should require some sort of counseling because of the cost and psychological ramifications should the patient not notice any changes. Change cannot happen overnight but we live in a "gotta have it now" world. Some day I would like to try simply having HBOT treatments, according to neurologist Dr. David Perlmutter "hyperbaric oxygen treatments increases by 800% the number of stem cells circulating in a patient’s body"  I am just hoping that maybe, just maybe I will eventually see changes in my balance, it would probably be helpful to also have MRI's, of course this will likely be pretty expensive so it will be quite some time before I can try my little experiment. Knock on wood and never give up! ~ Lisa

http://www.perlhealth.com/perlmutter-hyperberic-center/stem-cell-study

04-17-10  I used the BPT for one treatment, but realize now I do not have the funds to continue using it. My brain still sucks, and I keep messing up my Medicare benefits, I only have hospitalization right now. Though thanks to Dr. Ayre and Fran I now am able to fall asleep at night, it has been so long! He gave me a script for Temazepam 30mg! I can really get used to this "sleeping thing"! I need to keep updating my site, it's quite a brain exercise, thanks for your patience! Have a great weekend! ~ Lisa

March

03-30-10   I am still so damned tired! I can't stand not sleeping and only being able to sleep if I take a sleeping pill, my best guess is that I have a whole lot more lesions in my brain in the "sleep center"? It has been 10 years since the last MRI, I hope to be able to afford one soon! I literally just received an email from my doctors office who sent info on the above link, about UBI or BioPhotonic Therapy. I have never heard about it, but am absolutely game to give it a try! I have no idea if it will help with this frustrating insomnia but it sure can't hurt. I have gained way too much weight and I am strictly sticking to avoiding the foods that the Human Bloodprint blood test showed I have an intolerance to. It is really difficult being awake pretty much 24/7 and even if I fall asleep, I can't sleep through a growling stomach. Very frustrating! I am going to start weaning off of the Alprazalam tonight, which I have been taking for sleep. I made the mistake of just stopping before and half of my left eye was red, creepy looking but according to the pharmacist that happened because I did not wean off of it. I won't make that mistake again! Hopefully the smaller amount will still help me sleep. Knock on wood! Never give up! ~ Sleepy Lisa

03-17-10    If you have an interest in this new CCSVI theory I suggest checking out a website by a fellow MS patient, the wheelchair kamikaze. It is very interesting, I hope to one of these days see if I have this problem. I know for a fact that I have been eating foods that my body cannot tolerate, I know that is not helping by eating those foods. Though I have been eating these particular foods since birth I'm certain it will take more time for the healing. I admit I am no highly intelligent person, I sleep horribly which also does not help my brain. I am fortunate that I can still get around with my cane, though long distances I need the wheelchair. I actually just went outside to the porch today to play with my little Daisey today (yes, I know I added the e) spelling is actually something I do very well now math...not so much. I do plan on looking into the CCSVI, though I royally screwed up my Medicare so it will not be available until July. My brother Brian is going to inquire with the doctor who took care of his nasty varicose veins. They run in my family. It just appears to me that MS is not caused by just one thing, my blood test proved that! It has not been easy to eliminate these foods, but over this past year I have noticed some changes and since I have seen this fact from my blood test I will stay away from these foods. I know I have many lesions in my brain and who knows maybe in the end stem cells will be the only thing that will really help repair that damage.? As always only time will tell, but I'm a lousy quitter so I'll wait as long as I must! Insomnia is my absolute worst symptom, that is where maybe only stem cells will be able to help that. As always only time will tell! Never give up! ~Lisa

03-02-10   Sorry it has taken me so long to update. I love the Olympics! I didn't so much love the outcome of the greatest game in hockey, but am glad for the Canadians since they were the one's who invented the game! I have not found anything else about the possibility of Northwestern Memorial starting a study. I won't hold my breathe waiting. I'm also trying to be as logical as I can. I certainly know if I had that procedure done it will certainly not grow stem cells. My brain is so sucky, I can't sleep, remember short term things, and zero balance. I am leaning more towards stem cells at this point, it will just take time to raise the money. I know I will go to Dr. Frank Morales since I have already met him. Of course I am still sticking to staying away from the foods my blood tested positive to as intolerant foods. Never give up! ~ Lisa

February

02-12-10   I decided to start my letter writing campaign to search for any Chicago Hospitals who might be interested in possibly doing a study on the CCSVI theory, I decided to first write to Northwestern Memorial Hospital simply because I remembered reading about a young early on MS patient who was treated with stem cells and is now completely recovered. (I wish I could find that article!) I don't believe they are using stem cells as a treatment presently, I would imagine that is a ways off, FDA and all. So I thought maybe they might be willing to start a study on the CCSVI. My son sent the letter this past Thursday, so I guess I'll just have to wait to see what happens and cross my fingers. I included my little story and the fact that my neck always feels like it is being squeezed. I also included this link that creeped me out because the MRI pics on the right hand side of the page #'s 11 & 12 show exactly how my neck feels. Maybe I'm just crazy, but I sure would like to see my neck and if it looks similar to those MRI pics I'm talking about at this link http://www.ms-mri.com/  I figure it sure cannot hurt to ask. Maybe even the more patients who ask about a possibility the better.? Or they will be really annoyed with me:) The address is on the link above for Northwestern. I sent them the links for the CCSVI studies that are already going on in New York and Detroit. Hoping Chicago might want to get in on this new treatment! My insomnia is still horrific, but I took Xanax last night so I slept really well, I wish I could us it everyday but I always need to up the dose which makes my already weak legs even weaker. My legs should wake up by 5ish, so I will be using my manual wheelchair and my son until my legs feel stronger. This disease sure is a pain in you know what, but it has been interesting finding out about the foods I have an intolerance to for a fact and gluten is not one of them for me which I was very surprised about. I like facts! On my index page there is a link to the Human Bloodprint, that is what I had  done and I urge my fellow MSers to do the same you might be surprised, I know I was! Hopefully I will hear back from Northwestern soon. They may say no, but I sure hope they say yes! Knock on wood and please pray for this to work out!

Never give up! Have a Happy Valentine's Day! ~ Lisa
 

02-07-10    I have decided to write to some local and Chicago Neurologists to simply find out if any of them are interested in taking me on as a patient and mostly if they are interested in this new CCSVI theory. I know my short lived new Neurologist Dr. Zeidman had not heard of it until I told him about it. So possibly many Neurologists have not heard of this as well. ??? I'd like to find out!

Never give up! ~ Lisa

January

01-30-10    I must admit this disease is so frustrating and depressing. If I could only just sleep without the need of drugs that wipe out my already weak legs. Sorry if this sounds like a pity party, I'm just so tired and frustrated after these past 34 very long years. I of course would never even consider killing myself, that would just hurt my family. I'm just so mad at myself for not realizing that I had to sign up for Medicare parts A & B because at the time I first received SSD I was married and had BCBS so I never really paid attention to Medicare...big mistake! Because of the economy the Turkey Bowl did not raise quite enough money so I can get the testing to see if I do indeed have CCSVI, my Medicare benefits will not be available until July so that is likely when I will have this testing done. I will be very interested to see my MRI results to see if I have a lesion in my brain stem, that could be the reason why I can seriously never fall asleep without some drug. I guess only time will tell. My friend Connie's mom sent a link to me about an already FDA approved drug that can be used for MS. Here are some links;

http://www.webmd.com/multiple-sclerosis/news/20100122/ms-drug-ampyra-gets-fda-nod

http://www.cnn.com/2010/HEALTH/01/22/fda.approval.ms.drug/index.html?iref=allsearch

It looks to be quite expensive $5000-$10000 yearly! Zoinks!!! Maybe it is less if one has insurance? Looks like an interesting treatment for all forms of MS, I would presume it of course it would work better for those that are early on. If I had that much money I would find a way to get more of the SF1019 vaccine, that worked great for me. Hopefully that will be FDA approved soon. I guess it's back to the patience game:).

Have a great weekend! ~ Lisa

01-22-10    I'm still looking into finding someone who could do this procedure...but I must wait until my Medicare is available again. For fun and amusement I play PCH, I never buy anything but it is possible, maybe not probable but I have nothing else to hope for. Maybe if I can get somewhat better I can sew again and make a little money that way. I have not driven a car in 3 years so I do not see that happening again, walking would be great though! I'm not ready to give up it may take many years and cord blood stem cells, but I would like to find out!

Have a great weekend! ~ Lisa

01-16-10     Here to the hope that this will be a promising MS year for truly helpful treatments for all MS patients! I will continue to waste my time playing PCH.com, I figure it can't hurt especially since I do not buy anything. It's good exercise for my brain! I am still very much looking into the CCSVI theory, which I'm sure many if not all of you have read about. I told my son about this odd and kinda scary feeling I have been having for a while. It feels a bit like my neck is being lightly squeezed kinda like being strangled. A couple days ago I checked out this link; http://www.ms-mri.com/protocol.php and noticed on the right hand side, pages 11 & 12 shows stenosis of the jugular vein be fore and after treatment. That looks to me like the same spot I feel that light squeezing. It will be interesting one day after I have this test done to see if it looks similar....? But of course that will have to wait until I have the bucks. I need to reapply to Medicare so any benefits will not even be available until July...and I will be charged a late fee of about $100 per month for the time I did not reapply....I think that is ridiculous! My shrinking brain did not understand that and I am already basically bankrupt but can't really file without losing my house, which I am renting out. Sorry for venting! Just the MS frustrations!

I'm still not going to give up, but am really depressed about all this crap! Can't wait to have this MRI done. Knock on wood! ~ Lisa