northwestern stem cell trial - dr. burt

[nes]

so, i've been helping my partner (34, dx 2001, rrms) apply for dr. burt's stem cell trial at northwestern. dr. burt is working in conjunction with dr. balabanov, a neuro at rush university. so, today we got a call to schedule the on-site evaluation! i was so excited that all our initial forms and paperwork seemed to qualify my partner. but then i thought, let me get clarity on the walking component. my partner recently relapsed 3x in a row and each time her legs have been hit hard. right now she is in a wheelchair and can walk with a walker, but is still awkward at it. she has leg spasticity and pain combined with muscle weakness. anyway, i was concerned she might not qualify for the trial and the nurse told me that based on how my partner sounds right now, she won't qualify. i'm beyond crushed.

so, i've been trying to figure out everything we can possibly do to improve her odds at walking at a edss 6.0 level (to qualify). the nurse said she would need to walk down the hall with only minor balance help from touching the wall. i'm hoping a combination of meds and exercise will help get her to where she needs to be to qualify.

anyone familiar with the eval process for the northwestern study? how good did your walking need to be? if you don't qualify for the study, is there still a way to get this procedure done some way, some how?

i'm scared and feeling desperate at the moment. my partner is just getting by and i've barely accomplished anything due to the high level of support that has been needed of me these days. i can't picture a future like this.

[JerryD]

I am praying for you and your partner. I would give a PT a try. My insurance company nurse has suggested that to me. Good luck

[nes]

thanks jerryd!

when my partner was discharged from rehab last week, they set her up with in-home visiting nurses, pt, ot, and social work. i am investigating, even though it would be super challenging, if we can get her to outpatient pt at a local hospital. i feel like with more assistive equipment/technology, the therapists might be able to do more for her. she used to use an elliptical and have electric stimulation while in rehab. she was doing better then too. i also hope maybe i can convince her doctor to give her one more dose of acthar since she seems to be having more difficulty recently (another flare-up?? don't know).

my partner is scared of possibly having the stem cell transplant, but then after she heard she might not qualify, she was in tears. i think she wants this in her heart and i hope we can make it happen.

prayers and positive thoughts welcome. thank you all so much!

[Lisasberry]

There is currently a trial in Amarillo,Texas. You can find it by googling clinical trials gov. Then search for MS Amarillo. There are four excellent hospitals overseas that many Americans go to for HSCT. Germany, Israel, India and believe it or not - Moscow! All US trials have required an EDSS of less than 6. Overseas India, Israel and Moscow do not have those stipulations. There was a woman from Australia in a wheelchair who had it 2 years ago. She now walks beautifully!

Google George Goss Multiple Sclerosis for his web page with more info than you can imagine. His transplant was 3 years ago in India and he has recovered all function with no relapses. I put google for everything because I don't know if we can post links or not!

[JerryD]

Not to be a 'wet blanket', Lisa.
George Goss had his HSCT treatment in Heidelberg Germany. And, yes, all of his info can be googled.
I am patiently waiting for the right chance to appear for me. I have PPMS and I have contacted Northwestern / Dr. Burt's team about participating in any trial. The reply was that there was some evidence that this treatment has little positive effect on 'Progressive' MS. The respondent wrote that Dr. Burt had studied this treatment on PPMS patients some years ago, with little efficacy.
It is interesting that many other, non-US based, clinics do not make these same distinctions / exclusions. I keep waiting. Good luck

[fishead]

nes,

It is great that you are so commited to your partner. However, I would like to remind you that stem cell transplant is not the ONLY treatment that exists. You and your partner probably had your hopes set on it, but please remember that this is just putting you 2 on a different path. Maybe you will find something BETTER for your partner.

[kayooh]

There is currently a trial in Amarillo,Texas. You can find it by googling clinical trials gov. Then search for MS Amarillo. There are four excellent hospitals overseas that many Americans go to for HSCT. Germany, Israel, India and believe it or not - Moscow! All US trials have required an EDSS of less than 6. Overseas India, Israel and Moscow do not have those stipulations. There was a woman from Australia in a wheelchair who had it 2 years ago. She now walks beautifully!

Google George Goss Multiple Sclerosis for his web page with more info than you can imagine. His transplant was 3 years ago in India and he has recovered all function with no relapses. I put google for everything because I don't know if we can post links or not!

Hey Lisa,
Would you by any chance have web site addresses to the centers in the four countries mentioned in your replay?

Thanks.