notasperfectasyou wrote:I have spent a couple weeks on the internet trying to find folks who have had stem cell therapy .... and I must not be very good at it. So, I thought I'd ask here at my MS Info Home, TIMS.
SammyJo wrote:I have improved many of these symptoms myself with various alternative treatments I've done (LDN, cannabis oil, CCSVI tx, stem cells, ketogenic diet, mythelation/nutrigenomics). Some gave me amazing recovery then faded, but much has lasted, especially after stem cells. Still in a wheelchair, but I've been on a remission streak since May 2014, heat tolerance to 85 F, can sweat again, able to exercise, can get out of my wheelchair and walk on occasion especially on a niacin flush. Don't feel sick and miserable anymore, fatigue is down, but when I stand the orthostatic hypertension is very limiting.
notasperfectasyou wrote:Thanks NHE, do we know what type of stem cells this treatment was?
ElliotB wrote:"It works, just not for everyone."
IMHO, if it really worked, wouldn't it work for everyone?
(I looked into doing this treatment a few years ago, and like so many other alleged 'cures', "it works, just not for everyone", so I came to the conclusion that it likely does not necessarily work and decided against doing it.
David1949 wrote:Well I have more of a question than an answer. My wife found some literature regarding stem cell treatments for a variety of problems including MS at a clinic near my house. So I went to a seminar at the clinic tonight. The doctor seemed well informed. He explained how the treatment is done. The stem cells are extracted from the patients own body fat. The fat is collected using a process like liposuction. Then the stem cells are processed from the fat. For MS they inject a drug which opens up the blood brain barrier for about 1/2 hour. During that time they inject the stem cells into a vein and the cells find their way through the BBB and go to the damaged areas. It probably needs to be repeated after about 1 year. I asked if there was any experience with this procedure for PPMS which is the type I have. He said yes but that it works best if its done early. Unfortunately for me I'm about 20 years too late for that. But I also asked if it might delay the progression of disability. In my case he said it probably would not improve my condition much but he was more optimistic that it might slow or stop the progression. The procedure costs about $6500 and insurance doesn't cover it. Follow up treatments cost about $4500.
There were several patients who gave their testimonials and one of them was a woman who had both RRMS and Trigeminal Neuralgia. It helped her enormously for both conditions.
The doctor said the only risk is the cost. If it doesn't work I'm out $6500.
Right now I'm at about EDSS 6.5. I'm not looking forward to the next steps.
I can afford the $6500. So should I give it a try or does it sound too hokey? I'd like to hear what others think.
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