Search found 51 matches

by reallyreally
Wed Apr 26, 2017 2:02 pm
Forum: Stem Cells
Topic: 3 year (1/2) HSCT checkup.
Replies: 7
Views: 2577

Re: 3 year (1/2) HSCT checkup.

reallyreally, from 5.5 to 1.5 sounds incredible. Can you please tell us what issues you had 5.5 and what got improved and how much? . I think the EDSS can be subjective. I was affected over many areas, so no single issue was debilitating. Before and after HCST 1) Tightness in chest (didn't realize ...
by reallyreally
Thu Mar 02, 2017 9:56 am
Forum: Stem Cells
Topic: 3 year (1/2) HSCT checkup.
Replies: 7
Views: 2577

Re: 3 year (1/2) HSCT checkup.

"You ended up being randomized to receive no stem cells??? During follow up you developed enhancing lesions so you were able to switch over and receive stem cells??? Did you receive chemo???" For Dr. Burt's clinical trial at Northwestern in Chicago. Once you were accepted into the trial....you were ...
by reallyreally
Tue Feb 21, 2017 8:29 pm
Forum: Stem Cells
Topic: 3 year (1/2) HSCT checkup.
Replies: 7
Views: 2577

Re: 3 year (1/2) HSCT checkup.

1) Yes this was with Dr. Burt at Northwestern. 2) What was your EDSS before and what is it now I started at a 5.5 and am now a 1.5. 3) What was their screening process like to get in? I was in the clinical trial. I had to enhancing lesions within a short time when I was first evaluated. I was accept...
by reallyreally
Fri Feb 17, 2017 8:05 pm
Forum: Stem Cells
Topic: 3 year (1/2) HSCT checkup.
Replies: 7
Views: 2577

3 year (1/2) HSCT checkup.

Had HSCT done at Northwrstern Oct 2013 as part of the clinical trial. Just got my MRI and check up. My MS is still in remission. I am on no MS medications and have no new lesions. A couple previous lesions are almost undetectable now Still feel better than I did pre transplant. And would go through ...
by reallyreally
Sun Oct 23, 2016 2:23 pm
Forum: Stem Cells
Topic: My Two Year Follow Up HSCT
Replies: 7
Views: 3968

Re: My Two Year Follow Up HSCT

It's actually my 3 year anniversary!! I am still doing great!
by reallyreally
Thu Nov 05, 2015 8:16 pm
Forum: Stem Cells
Topic: My Two Year Follow Up HSCT
Replies: 7
Views: 3968

Re: My Two Year Follow Up HSCT

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.
by reallyreally
Thu Nov 05, 2015 7:31 am
Forum: Stem Cells
Topic: My Two Year Follow Up HSCT
Replies: 7
Views: 3968

Re: My Two Year Follow Up HSCT

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 alm...
by reallyreally
Tue Oct 20, 2015 6:25 am
Forum: Stem Cells
Topic: My Two Year Follow Up HSCT
Replies: 7
Views: 3968

My Two Year Follow Up HSCT

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 m...
by reallyreally
Fri Jan 23, 2015 10:59 am
Forum: Stem Cells
Topic: Advice needed. What country is best for HSCT? I'm doing this
Replies: 1
Views: 1564

Re: Advice needed. What country is best for HSCT? I'm doing

I PM you. I had the procedure done under Dr. Burt Oct. '13.
by reallyreally
Thu Nov 13, 2014 10:32 am
Forum: Stem Cells
Topic: Why do hsct bloggers stop posting around the one year mark?
Replies: 6
Views: 2269

Re: Why do hsct bloggers stop posting around the one year ma

I hope you continue to do well. Thanks Anonymoose--That means a lot to me!! Maybe they think people aren't interested in hearing about their always good/no change updates? . Yes! I feel that way. Also, feel like a lot of people don't really understand this treatment, and some are not open to really...
by reallyreally
Sun Nov 09, 2014 12:25 pm
Forum: Stem Cells
Topic: Why do hsct bloggers stop posting around the one year mark?
Replies: 6
Views: 2269

Re: Why do hsct bloggers stop posting around the one year ma

The bloggers I follow have all stopped posting updates or deleted their blogs after about a year. What's up with that? I don't think people stop posting because they get worse. I think they quit posting because life continues; and they have remained stable; and there is nothing to update or report....
by reallyreally
Tue Nov 04, 2014 6:54 am
Forum: Stem Cells
Topic: My 1 Year post HSCT update
Replies: 7
Views: 2237

a

I thought they changed their treatment to include 1 year of copaxane? This is HiCy at John Hopkins isn't it? This was the HSCT Hematopoietic stem cell transplantation (HSCT) at Northwestern under Dr. Burt. It is not the same protocol (HICY) that they use at Hopkins or UTSouthwestern In Dallas, TX o...
by reallyreally
Mon Nov 03, 2014 9:06 am
Forum: Stem Cells
Topic: My 1 Year post HSCT update
Replies: 7
Views: 2237

Re: My 1 Year post HSCT update

Pesho--What happened in your pursuit of treatment?
by reallyreally
Mon Nov 03, 2014 9:04 am
Forum: Stem Cells
Topic: My 1 Year post HSCT update
Replies: 7
Views: 2237

Re: My 1 Year post HSCT update

Thanks! I am very happy, feel very lucky. I hope more and more people find out about this; and that Dr. Burt publishes his findings soon. I will continue to post updates, though doesn't seem like there is a lot of interest for this treatment here.
by reallyreally
Fri Oct 24, 2014 6:54 pm
Forum: Stem Cells
Topic: My 1 Year post HSCT update
Replies: 7
Views: 2237

My 1 Year post HSCT update

Just returned from Northwestern from my 1 year check up from my stem cell transplant with Dr. Burt. I have not been on any MS medication since August of 2013. My MRI with contrast of brain and spine showed no new lesions. I am still a 1 EDSS (down from a 4.5 14 months ago). I will return again next ...