I read a story this week in the paper about a local woman who has raised £20k to go to Russia for this treatment in attempt to control her M.S. Id love to hear everyone's thoughts on this type of procedure. So this isnt to regenerate ( I'm sceptical about how feasible this is anyway), rather, this is to reset the immune system by wiping it out with chemo I believe then re introducing stem cells from your own body to re populate immune cells. The hope is you wont have a crazy autoimmune system thereafter.
I don't know exactly why M.S is the target at the moment and not a full array of autoimmune problems

The results of a number of clinical trials suggest that autologous stem cell transplants are a promising approach for treatment of MS. My understanding is that this is still at the experimental stage. See Stem Cells in MS : National Multiple Sclerosis Society.

Personally I would need to know a lot more about the Russian entity (How long have they been operating?, Have any results been published in the peer-reviewed medical literature?, etc) before deciding whether or not to spend £20K.

Here you'll find the woman who famously had her MS cured via that route: Moving Mountains to defeat MS | Facebook. She has now become an advocate and helped many others apparently.

Also, you'll want to look here, if you already haven't: Patient Care: Department of Medicine: Feinberg School of Medicine: Northwestern University.

I looked into all this, and if my situation were worse and I had the money, I would consider it. The latter can perhaps be remedied, if the former changes.

Thanks Kiwi! Thanks David! Excellent links. I agree totally Kiwi. I wouldn't even try to raise the money for that at this stage without knowing the full facts / evidence / validity. I do believe from all I've read that there is some possible hope in this. But, I always feel suspicious when huge sums of money are involved and it's somewhere like Russia. No criticism of Russia but I question why the U K or U S.A aren't offering out this same procedure now if the results are so spectacular.
The clinical trials are hopeful and I see that is happening here- sadly, this is so often such a long drawn out process. I understand safety is the real concern. I'm pleased that clinical trials are happening in research establishments and not necessarily big pharma led. This is not a winner for them I'd imagine

Having read as much as I can on the topic, I don't yet understand specifically why M.S is being hailed as the key disease to benefit from this. Autoimmune disease is autoimmune disease whichever way you are affected. So this is supposed to manage the errant immune system - so why wouldn't it apply to all autoimmune disease.

I read through pages of the Facebook link you posted David. I saw that lady on tv once. I don't know why, but I feel suspicious of the circumstances surrounding some of these people who have achieved remission on there as a result of this. I may be being too negative and critical. I'm no way underestimating M.S as I know it is very scary but I believe some of the effects of peripheral nerve diseases are on a par with some of the horrors of M.S. There is however so much attention, publicity, fundraising and almost a sense of positive support for that condition. Having some obscure, terrifying, agonising condition that isn't quite known yet certainly does not illicit the same support or understanding I feel. Knowing exactly what you have, what it's called, why you have it, is so important. But it isn't easy at all with so many of our bizarre conditions.
Thanks again both, really good reads as always!

"Autoimmune disease is autoimmune disease whichever way you are affected. So this is supposed to manage the errant immune system - so why wouldn't it apply to all autoimmune disease."

This is a "hot topic" at the moment.

Autologous mesenchymal stem cell transplants have been investigated for treatment of MS and SLE, with encouraging results Cell Death and Disease - Mesenchymal stem cells and immunomodulation: current status and future prospects.

Autologous haematopoietic stem cell transplants are also looking promising for autoimmune diseases like systemic sclerosis, SLE and RA Hematopoietic stem cell transplantation for auto immune rheumatic diseases.

Thanks Kiwi, this looks so much more promising and from a much more encouraging source. I see there are a few barriers yet to overcome. I do wonder about the effects of chemo as part of this. When we already have nerve damage could that not just add fuel to the fire. None the less this offers real hope. I really want this to progress and become an option in the future

Kiwi, thanks for the links. I had read one but not the other. Quite useful.

Joanna, though I certainly understand your apprehensiveness and doubt, as there are plenty of places out there who are just gunning for our money, I don't doubt her story or her activism or advocacy. She has helped quite a few people. They do this in Singapore and Israel too, or had done so. This is the same procedure used at Northwestern, and it has been used on more than just MS. As the link shows, they're willing to treat a number of autoimmune diseases, and have done so with success. There are all these Youtube videos for the work Northwestern has done, in case you're interested. There are of course risks and going to Russia, for example, may be riskier, but when it's between life and death and the cost difference is 100k, risks are taken. Honestly, if things became terrible for me, I'd consider it, and do see a real cure for me in this form of treatment. But The chemo, though necessary, is not without serious risks of its own. The success rate is apparently much higher. I believe Dr. Burt (Richard K Burt, MD : Faculty Profile: Department of Medicine: Feinberg School of Medicine: Northwestern University) is doing a large study now with MS patients and perhaps one with CIDP. I contacted them about my condition but they said they need a cause and it needs to be among those that they treat. I only have a diagnoses of SFN at this point with no known cause.

So much of this is still in its infancy, but real people need real help now, which is what makes it all so frustrating.

I went to northwestern and met with Dr Burt to try to get the stem cell treatment done for CIDP. I went through all of the required testing, after reviewing everything he told me that he did not doubt that I had some sort of immune process causing my neuropathy, but he did not feel it was bad enough to go through his stem cell procedure.
There is risk to wiping your entire immune system out, so I guess they want to be sure our condition is bad enough to warrant the risk.
There were people who had success with it on a former CIDP board I was on. It was a requirement that they had failed other treatments before getting into the clinical trial Dr. Burt was doing.

Thanks David, that's really useful info. No price would be too high to have my life back. The evidence has got to be there as the risks are high. What you have provided is really hopeful info. I watched a documentary about the M.S lady. She is genuine I believe of course, it was more the circumstances of her condition and the particular stage she was at which did make her seem a more likely success tyan possibly others.
I am very cynical after having put so much hope in expensive nonsense. This does seem hopeful. I just wish like you that they could perfect thw process and sometime soon :-(

That's really interesting northern gal. They are pretty rigid on clinical trial selection and i do see why. It's frustrating for us though. Alot of us dont fit into neat boxes required for clinical trial selection.