Thank you! I wish I could have seen this video 10 years ago and this treatment was available to me when I was diagnosed
@kmcq692
Жыл бұрын
I suppose this grief we have is common for many with different diseases, as treatments evolve and rotate in and out of favor and awareness. We did the best we could with what was known and believed. At least, that’s where I’m landing today.
@cherylvl1036
Жыл бұрын
@@kmcq692 I’m thankful that if one of my kids get diagnosed with MS there are better treatments available for them than there were for me.
@kmcq692
Жыл бұрын
@@cherylvl1036 meeee too.
@ZoyaStreet
Жыл бұрын
Thank you so much for sharing this with us!
@ernietollar7767
Жыл бұрын
Is the myeloablative HSCT still practiced in Ottawa? I've heard top practicioners taught non myeloabletive HSCt as as effective...
@ernietollar7767
Жыл бұрын
Thank you greatly Prof. Giovannoni. Sorry the graphs on screenshare were impossible to see.
@metak71
Жыл бұрын
Ty prof G exactly!!!!!
@ernietollar407
Жыл бұрын
The fatality happened using Busolphan, correct? Is it still used in Ottawa's HSCT for MS or no longer?
@ProfessorGiovannoni
Жыл бұрын
I think it happened due to being oral (live toxicity) and they have switched to the IV route.
@metak71
Жыл бұрын
I wd only add that ocrevus is not nearly effective as irt
@alyassery11
Жыл бұрын
Any experience with HSCT for Behçet's?
@__Wanderer
Жыл бұрын
I would do this if it were possible, sadly the Netherlands doesn't even offer HSCT... Even to severe cases. NL still has a backwards treatment plan of escalation.
@ernietollar407
Жыл бұрын
Here in Toronto with their first line is DMT's, and I tried Ocrevus in Jan 2023 but it only had negative effects on my MS symptoms such aT in Puebla Mexico Aug 28, 2023. They will admit patients if HSCT is I think below EDSS 7 or 8 (or something quite advanced) and even then they would consider it after some discssion, possibly making exceptions
@__Wanderer
Жыл бұрын
@@ernietollar407 sorry to hear this :( Yep it seems to be a very variable disease + every medication seems to interact differently with people. Im currently on something in the middle in terms of efficacy (* vumerity ) but would prefer to up the medication to prevent any relapses. Here in the Netherlands they wait for relapses or worsening before providing the better/ more effective medication... bit backwards imo. It will be a bit late if I end up in a wheelchair / go blind. (I am already blind in one eye from my first relapse sadly :/ - only in my late 20s... ). HSCT is also something that isn't done here despite many of the international teams all being Dutch / from the netherlands. I half believe that big pharma companies are holding this HSCT treatment back. Not into conspiracy theories at all but it seems strange the treatment is not more widespread. For a company I suppose 20,000 people on very expensive life long medication is preferable to a one off treatment...Wishing you all the best Ernie :)
@ernietollar407
Жыл бұрын
@@__Wanderer Thanks. I am trying to study this listening / reading Dr. Brandon Beaber, Dr. Dr's Federenko and Ruiz in Russian and MexicoRichard Burt. Pf. Gavin Giovannoni. And after hearing enough top level opinion that this treatment is the most effective I became interested in doing it as soon as possible. Also my progression has only sped up on Ocrevus. Dr. Burt does not perform HSCT for PPMS but others do.. There are people with PPMS who have clearly benefited beyond wishful thinking. There are a lot of opinions an testimonials worth listening to
@__Wanderer
Жыл бұрын
@@ernietollar407 Indeed from my cursory reading on the topic of HSCT people frequently stay in remission for 10+ years, sometime even permanently. Hope to also someday take this treatment if it becomes approved in the Netherlands / EU.
@pattischmitz2680
10 ай бұрын
Can anyone get hsct?
@taopaille-paille4992
8 ай бұрын
Lifestyle (exercise) and diet play quite a big role in MS evolution (like a lot of diseases). It would be nice to take that into account for the studies. We can assume that those that use HSCT are maybe more driven than other patients to try decrease the evolution.
@ernietollar7767
Жыл бұрын
can you talk about HSCT for PPMS specifically? Dr. Ruiz finds good success but Dr Burt does not see it that way?
@bg5760
Жыл бұрын
What about using umbilical derived msc’s to reinfuse the stem cells and immune system?
@ernietollar407
Жыл бұрын
3:19 . My words and question are amateurish, but I'm learning fast (PPMS): Am I Are you differing from Dr. Richard Burt on myeloablative vs non myeloabletive HSCT? I understood that he has found that non myeloablative HSCT was strong enough and quite comparable in achieving immune reboot. The Ottawa chart finding are 2017 I think and I understand that many successful non myeloablative HSCT procedures with Cyclophoshphimide have show notable success. There are only a few of you at the top level posting and sharing so patients like me can try to weigh the opinions. A big summit where the someone logs and interprets and explains where top professionals agree and differ. Regardless of
@ProfessorGiovannoni
Жыл бұрын
We don't go ablative in London. We think the risks are too high.
@annlafontaine6972
Жыл бұрын
Where do you suggest getting a stem cell transplant? We live in SC.
@barbaradascalos4411
Жыл бұрын
"India hsct" only charge $30,000
@pattischmitz2680
10 ай бұрын
@@barbaradascalos4411 Do they have certain criteria s?
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