This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi all. I am so new to MS so sorry if I seem uneducated or whatever, but my wife was just diagnosed and I'm still learning. In fact I'm so new she hasn't even started her meds yet. Though she was diagnosed with RRMS ...

Anyway. I want to ask why stem-cell treatment like the one Dr. Burt is doing at Northwestern isn't widely accepted yet. I mean when 0 out of everyone who had it done has had no progression of the disease years out ... isn't that enough to convince people this works?

Why isn't everyone rushing out to have this done?

Also, again, pardon my ignorance ... but since it's a phase III trial ... if the results of that trial show the same thing do you guys expect it to become common treatment (I ask especially because there are no drugs involved, so they may get the FDA to block it or whatever). I just think Dr. Burt's study has shown so much progress and so much help that if it isn't FDA approved, something is seriously wrong with the healthcare system in the US.

Sorry for ranting, I hope someone can explain it to me though.

I am a firm believer in Dr. Burt's protocol. Unfortunately, the first study only had about 20 patients. They had awesome results, but that number is kind of low to prove his theory. He's now working on a larger study which is randomized to track the patients who receive stem cells in order to compare their results to those on the other side of the study who are taking either tysabri or chemo. I believe the study tries to start two people per week. Using that formula, that's about 8 people treated a month. Dr. Burt will need to have a significant number before he can publish again.

I think some of us with m.s. were very excited about what Dr. Burt published last year, but some are leary.. taking a 'wait and see' approach. I believe northwestern is still in open recruitment if you want to apply to be in the study.

The downside to being in the study is that they do not have funding for your medical bills so you'll have to convince your insurance to pay for it. If not, the bill may be around 90,000. In addition, you will need to be in chicago for 2-3 months if you are randomized to the stem cell side of the study. You'll have to rent a place and make arrangements for someone to be there the whole time with you.

The entire protocol is not for the feint of heart. The chemo they use will completely wipe out your entire immune system which can lead to a quick death if you get an infection (although they haven't lost anyone due to this reason that I've heard about). You'll lose your hair (which will grow back!). Women could be thrown into early menopause.

I think once Dr. Burt publishes again and if the results are like the previous study, then I think this protocol will be passed along to other immunologists/neurologists so they can start doing the treatment on their patients. But first, the study must be completed to prove that it helps. They are on the right track. His team is very motivated and organized. My hope is in the next year or two, this will become standard treatment for those who want to go through the protocol.