My Two Year Follow Up HSCT

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My Two Year Follow Up HSCT

Postby reallyreally » Tue Oct 20, 2015 6:25 am

Just returned from Chicago for my 2 year exam. I received a hematopoietic stem cell transplantation under Dr. Burt at Northwestern as part of his clinical trial.

I am on no MS medication and have had no new lesions or relapses since my transplant. I started at a "4" on the EDSS scale; was a "1" at my 6th month follow up, and am still a "1" EDSS today (have minor balance issues that I am going to work on).

I was in the hospital for 17 consecutive days. Some of it was a blur. But, I would do it all again.

I was very lucky that my insurance covered the procedure. I know it is not suited for everyone, but hope that it will some day be available for everyone that would like to have this treatment. Seems like when the insurance company's break point happens within 1-3 years, it would seem more cost effective to them.
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Re: My Two Year Follow Up HSCT

Postby kujaw » Thu Oct 29, 2015 1:22 am

Great news! I'll have mine next year, hopefully it will halt the disease.
Can you compare briefly your symptoms before/after HSCT?
And what about fatigue or brain fog? How was it before, how is it now? This is my worst symptom, unability to concentrate more than 5 mins on anything, forgetting many things, sort of "disappearing" in the middle of the conversation and really difficulty in thinking. Really exhausting.. ;)
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Re: My Two Year Follow Up HSCT

Postby reallyreally » Thu Nov 05, 2015 7:31 am

Hi-Before and after HCST

1) Tightness in chest (didn't realize I had)-- Gone
2) Balance problems-had been getting worse-- Still some slight balance (when I close my eyes, and stand one one foot), but mostly gone
3) Brain fog (didn't really realize i had)-- My scores have improved on testing, and almost immediately (while still in hospital) my scramble
with friends score improved dramatically-haha
4) Numbness in leg and trunk-- Still there
5) Difficultly swallowing & choking at times-- Gone
6) Bladder urgency-- Improved, but not gone (am I just getting old?)
7) Vision-- Improved.

Fatigue never really affected me. Hope this answers your questions. I feel some of my symptoms come back when I get stressed or really tired, which the Dr explained is normal.
I feel extraordinary lucky to have been able to have this procedure before my disease progressed too much. And continue to hope that it has halted. I feel a little anxiety every year when I go to get my MRI's. And hold my breath until I get my results.

Good luck with your procedure! Feel free to ask other questions.
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Re: My Two Year Follow Up HSCT

Postby CureOrBust » Thu Nov 05, 2015 2:42 pm

reallyreally wrote:I know it is not suited for everyone, but hope that it will some day be available for everyone that would like to have this treatment.
Good to hear you are doing so well. Were you RRMS or SPMS? did you originally have a lot of enhancing lesions on your MRI?
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Re: My Two Year Follow Up HSCT

Postby reallyreally » Thu Nov 05, 2015 8:16 pm

Good to hear you are doing so well. Were you RRMS or SPMS? did you originally have a lot of enhancing lesions on your MRI?


RRMS; I had many lesions on my brain, including a couple new enhancing lesions right before my treatment; and 3 (I think) on my spine.
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Re: My Two Year Follow Up HSCT

Postby kujaw » Mon Oct 17, 2016 11:08 am

@reallyreally it's almost been a year since your HSCT. How are you feeling now? Anything changed? I'm really curious cause I'll start chemo in January and I'm totally scared.
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Re: My Two Year Follow Up HSCT

Postby reallyreally » Sun Oct 23, 2016 2:23 pm

It's actually my 3 year anniversary!! I am still doing great!
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Re: My Two Year Follow Up HSCT

Postby 81Charger » Thu Oct 27, 2016 1:05 pm

I know reallyreally that your insurance paid for this but do you know the cost if I decided to have this done. I'm Canadian so I'd have to pay.
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