This Is MS Multiple Sclerosis Knowledge & Support Community

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Lyon wrote:If you're interested in reading them, I had a ton of HDC studies in my hard drive but I've since lost everything and need to refind and redownload them.

Thanks for the offer, if you end up doing it anyway I'd certainly enjoy looking through them, sounds like a bit of work though!

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Couple of unconnected things . . .

* About the autopsy stuff: Here's my history, for example. I am the type who ignores everything. I would have been diagnosed years earlier if I'd ever gone to the doctor and looked for any intervention. When I was dx'd I was in pretty bad shape. But for years before that I was a "healthy" young adult (in denial).

* I knew an individual who was a Freedman patient. Followed his advice and did some serious drugs to deal with the MS. Experienced remission from the MS but had such severe side effects from the drugs that the quality of life was worse than it would have been if there had been no drugs and just MS progression. So yes, technically it was a "positive" outcome from an MS point of view, but certainly not from an overall functional point of view. Bottom line: I was grateful my neuro doesn't do that to me.

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In Dr. Freedman's defense: there is one woman he treated with autologous stem cell, who has had a real reversal of her disability. Sort of like some of the videos I have seen here, but with the opportunity of more time to get used to it, I think. The way I think they talked about it she had worn high heels and such. I sure would like some of that kind of recovery. One patient only, so they can't reproduce it.

I have no idea about her brain atrophy. I think possibly that was associated with the same agent that caused the liver failure -- they aren't using that anymore. I have seen info on Campath used in the ablation, and this Cyclophosphamide pulse guy gives a pretty good argument for no other ablation. My brother had a marrow transplant, and I believe they used Campath and Rituximab both on him (as well as radiation and who knows what else).

I don't think the Freedman/Atkins team were on my brother's case. Not sure.

Your a good researcher Lyon.

What a medical mistake. Thanks, Lyon, it's all pieces of the puzzle.