Applied for HSCT in Chicago

[Katje]

Last week I filled out the paperwork to qualify for HSTC with Dr. Burt in Chicago. I had MS for over 25 years, still RRMS and no progression for over 15 years. I currently had a relapse with many many new lesions. EDSS 1.0 - 1.5.
Left sided weakness, slurring and spasms. I am better now after 2 months but still I can get little episodes.

After reading another post where they feel someone's MS has gone too far, I think Dr. Burt doesn't feel mine has gone far enough or aggressive enough, however they did request a copy of my last MRI but haven't heard back.

I am trying to figure out what they look for to qualify for these trials.

[JerryD]

Since there are about 400,000 people with MS in this country, 75% of them RRMS, IMO Dr. Burt is picking patients that give him the best chance of showing that his clinics version of HSCT is the pre-eminent treatment among all of the world wide clinics. I don't mean to talk negatively, but it is what it is.
I am glad that you are pushing for admittance into a study in the US. I sent an email to the Northwestern clinic 3 times in the past year. I sent an email to d-spahovic at Northwestern just this week. I got no response.
I, too, will continue to push for this treatment. I found out that the Ottowa General Hospital performed HSCT on a guy named Alex Normandin, now a doctor, in 2009. It seems that it was a success.
All that I want to know is ' when do I get my chance'? Good luck

[Katje]

I would think I would have given him the results he wants. His nurse told me he wanted me to wait for another relapse or for the MRI to say aggressive lesions. I thought that was odd since he never even saw my MRI and only asked for the report. I am a bit frightened to push this because I am afraid of the chemo and how they take your immune system down to zero, not to mention the long term side effects but everyone seems to think I need to get in asap so that's what I am trying to do.

I have not been turned down officially, he did ask if I wanted to come in. Well I live in Colorado and I don't feel like seeing a doctor I have to fly to for no reason.

What kind of MS do you have Jerry and why were you turned down?

[JerryD]

Katje,
I have PPMS and, therefor, no FDA approved treatments. And, when I did get an answer from Northwestern, it was to tell me that Dr. Burt's protocol has been focused on RRMS patients. At this time, there is no thought to perform HSCT on patients with progressive forms of MS.
I am watching the clinical trials site, like a hawk. I am also monitoring, as best as I can, anything that concerns MS or auto-immune disease treatments. So, today, I read in the newspaper that patients taking a combination of 'B' vitamins have been shown to slow the progression of Alzheimer's. This is from work done at Karolinska in Sweden.

[Katje]

Jerry, I think there is a trial in Texas on PPMS only using stem cells.