This Is MS Multiple Sclerosis Community: Knowledge & Support

Are we talking 3/5/7 or ten years, or even later?

Any predictions?

It depends on what kind of stem cells you're talking about.

The first type to become widely available will be autologous hematopoietic stem cells. The most advanced trial is a phase 3 (http://www.clinicaltrials.gov/ct2/show/NCT00273364), but it hasn't completed enrollment yet and is a 5 year study, so it would be at least 6 years until approval. There are some with MS who have already been treated with this type of stem cells without participating in a trial, I think. They initially only did this type of transplant after wiping out the immune system entirely, but are now investigating how well these cells work without a complete "rebooting".

Next up will be mesenchymal stem cells. There is a small phase 2 trial in Israel that might be complete now (http://www.clinicaltrials.gov/ct2/show/NCT00781872). There was a small trial in Iran that is complete. There is a trial ongoing in the UK (http://www.clinicaltrials.gov/ct/show/NCT00395200) and there is a US trial starting soon, I think at the Cleveland Clinic. I would guess this type of stem cell treatment would still also be at least 6 years off, if not more.

For other types (e.g. neural precursors or oligodendrocyte precursors), they are just starting phase 1 trials now, so that puts them at least 8 years out, if not longer.

Hope that helps, sorry I couldn't come up with an earlier date.

Looks like were a long way off yet...thanks for responding!

Daisy, just fyi you can currently get stem cell treatment in several countries - Israel, Germany & Costa Rica are the primary ones. Needless to say, these are not within mainstream medicine, but several people have had this done. From what I can gather, the results have been mixed - some people have done well, others no improvement. If you are interested, the msworld.org forum has several people posting their experiences. I personally think CCSVI is the best way to go at this point.

I got confused on the last sentence where you say "They initially......." Were you referring to northwestern or the others that were treated outside the northwestern study? Are you saying that northwestern has changed their protocol?

Sorry chachacha, bad wording on my part. I meant that stem cell transplants were initially done in conjunction with wiping out the immune system starting in the late 1990s, not specific to the Northwestern study. The Northwestern study hasn't changed it's protocol.

Dr. Burt, who was (is?) at Northwestern was the main pioneer in using stem cell transplants to treat MS.

http://www.ncbi.nlm.nih.gov/pubmed/9071509

.

Stem cells from Costa Rica did not work at all. It hurts to see friends get it and not do as well as they expected. I did well for a month but went steady downhill and am still going. My neuro thinks it did more harm than good and I believe him. He was neutral on me getting it unlike alot of doctors.

What stem cells did you try? I have spoken to people personally that have had some success. Have you looked into CCSVI?
Maybe stem cells and chemo works on those with no vein issues but for others, maybe vein treatment should be done first???

My nightmare at this point is mu hubby not having blocked veins-taht would leave me stumped. That's why I am taking an interest in stem cells-we always need something to look forward to-I am wary of places like Mexico and China,if it was so good surely we would be offered it in Europe and the States?

There is a study being put together of mesenchymal in Montreal, Canada, by Dr. Bar-Or at the Montreal Neurological Institute and Hospital (MNI). Dr. Bar-or used to work with Dr. Slavin (In Israel), who has been working with mesenchymal stem cells longer than anyone else.

I paid for Dr. Slavin's treatment, and while I am only two months post-infusion, I am very very excited with the results in the last few weeks, and from people I've spoken to, and according to Dr. Slavin, it seems that I can expect no less than 3 years without relapse, if not much longer. I'm beginning to believe that, I'm feeling so well.

Anyway, if you can't pay for the treatment (USD$28,000), the study in Montreal is still being put together, and it seems that it will follow Dr. Slavin's protocol closely.

Dr. Amit Bar-Or is not the only doctor working on this study, I know that Dr. Jack Antel - also at the MNI - and Dr. Freedman - working on autologous hematopoietic stem cells with 'rebooting' in Ottawa - have also been involved to some degree. Dr. Bar-Or, though, seems to be the person to contact.

Daisy, I should really write this in the CCSVI section but my CT/MRV and Doppler showed no stenosis. My venogram showed a totally occluded left jugular vein. (I believe venogram is the only definitive)
PM me or check out my thread on the CCSVI section x


Ariehs It sounds like the stem cells are doing something for you which is great. Did they reboot your system with chemo first?
What are the risks associated with the procedure you had?

Dr. Slavin's protocol does not involve chemo. In July I had some bone marrow extracted, then they cultured the mesenchymal cells - so they infused me with 50.7 x 10 ^ 6 cells (50,700,000 to 3 sig digs) instead of only a few tens of thousands. They also prepared enough for more infusions should I need them in the next 15 years or so.

I am not completely symptom free, but I am walking completely unassisted again, no longer heat sensative, taking Yoga classes ( including hot yoga), kickboxing, fatigue free, and while normal sensation has not completely returned to my left hand, there gas been significant improvement.

Even if the critics are right, and this is only an expensive temporary relief... This relief is worth it!

I have a thread "Got it done - Dr. Slavin's Protocol" where there is a lot more detail.

There is no risk to the treatment. The doctors - by law - must tell you about risks of cancer from stem cells, but I looked it up, and the rate of cancer in stem cell recipients is within the margin of err of the general public.

Please excuse any typos. I am on my cell at the moment.

Daisy 3,
Not to put a damper on it but stem cells are more of a placebo mind over matter thing. If you can afford it every 4 months or so, it is great. Dont get discouraged. They do tend to give you alot of false pretense, and oddly enough don't even wear gloves during the procedure. Im a nurse and I cant understand that. They need to be cited for that. If there is not blockage, that is good. This liberation surgery is invasive. It is hard to hear but the best thing to do is to not make MS like a person, take your medication combination that works, and be happy. Live every day like it is your last, in a good way. It sounds pollyanna but believe me-I have tried it both ways and I have never been healthier or happier. Laugh. Find things that are funny. It realeases good chemicals in the brain. Exercise on the level you can. Everyting works out as it should. I know how angry a person can get because this is an awful disease, but just find a good neuro and work with them on the meds. Go with the American way. It does work. And really, everyone has some disease, yours just happens to be MS. It can always be worse.
Michelle
Texas

Stem Cells are not a placebo to be taken every 4 months. That simply is not the case. I acknowledge that a large part of my recovery could almost certainly be credited to the placebo effect, but that is true of EVERY treatment for anything. Side effects as well as recovery. The placebo effect is so massive and pervasive that it can never be discounted.

I didn't persue stem cell treatment lightly, nor should anyone. You speak to your treating physician about it, you speak to the doctors who offer it, you speak to some of their patients who received the treatment. You read about it endlessly - at places like thisisms, and in medical journals, and in newspapers and traditional media websites. You don't just listen to one person, and you don't just accept what a few people tied the medical establishment say. Get all the information you can, and make your own decision about YOUR treatment.

Remember this: Doctors have a responsibility to not offer false hope or take risks. They also have liability to worry about. Many have been treating MS patients since before the CRABs medications were available, and so have a different view of these things. They are not necessarily receptive to new legitimate avenues of treatment. This is why it is important to both hear them out AND to think for yourself.

When it comes to CCSVI, the hesitation is even greater. This flies in the face of everything they thought they know, and it is prevoking an extreme reaction. Smart professionals are opening their mouths and saying false and sometimes stupid things. In some of the worst cases, though, it is an outright hostile response.