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.
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.
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.
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
@@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 :)
@@__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
@@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.
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
Thank you! I wish I could have seen this video 10 years ago and this treatment was available to me when I was diagnosed
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.
@@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.
@@cherylvl1036 meeee too.
Thank you so much for sharing this with us!
Ty prof G exactly!!!!!
Thank you greatly Prof. Giovannoni. Sorry the graphs on screenshare were impossible to see.
Is the myeloablative HSCT still practiced in Ottawa? I've heard top practicioners taught non myeloabletive HSCt as as effective...
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.
I wd only add that ocrevus is not nearly effective as irt
The fatality happened using Busolphan, correct? Is it still used in Ottawa's HSCT for MS or no longer?
I think it happened due to being oral (live toxicity) and they have switched to the IV route.
Any experience with HSCT for Behçet's?
What about using umbilical derived msc’s to reinfuse the stem cells and immune system?
can you talk about HSCT for PPMS specifically? Dr. Ruiz finds good success but Dr Burt does not see it that way?
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.
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
@@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 :)
@@__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
@@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.
Can anyone get hsct?
Where do you suggest getting a stem cell transplant? We live in SC.
"India hsct" only charge $30,000
@@barbaradascalos4411 Do they have certain criteria s?
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
We don't go ablative in London. We think the risks are too high.
Morning 👋🏻
Hi.
Citizens Jury = Madness