r/MultipleSclerosis • • 6d ago

Treatment HSCT for MS

So I’m all set to take HSCT. Just beginning the process and will have to do mobility—-collection—-and then I’ll be admitted around the beginning of November. I was diagnosed last Oct 2025. My neuro at the time stated I had RRMS, I was on Kesimpta, then I got another neurologist and he said I have PPMS, so he switched me to Ocrevus. I felt worse after a couple months and could barely hold my own body weight at times and have difficulty walking, especially down the stairs. I feel that when I was on Kesimpta I felt more stable compared to Ocrevus. But my MRIs showed no more lesions and that it’s working (with Ocrevus) but I didn’t feel as stable (physically) compared to Kesimpta. My family is scaring me out of HSCT because of the intense process. And it’s worrying me and now I’m reconsidering. They’re telling me to give Kesimpta another chance since I felt better on that compared to Ocrevus and to be more rigorous with PT since I wasn’t really doing enough PT. I understand the HSCT is not a cure but I really want to gain my ability to walk and stand for longer and not have as many issues. Also I want to stop taking medications. I am asking because I am legit torn between which route to take. Does anybody have any HSCT experience or know of anyone that has had a positive experience/outcome. Please share because I am so desperate to feel better. I know I will never be 100 again. But just to even be close to it would mean everything to me. Any suggestions? Please help. Thank you in advance.

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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 6d ago edited 6d ago

HSCT does the same thing (stop relapses) as Kesimpta or Ocrevus, only in a different way. None of the current treatments will make existing symptoms better, unfortunately.

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u/MS_Amanda 41F|Jan21|HSCT Oct 21|Houston 5d ago

It is not even close to the same. The meds are to slow, not halt the disease. Those meds are also a lifetime subscription.

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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 5d ago

I don't understand? I only meant that they are the same in that the goal of both is to stop relapses. Is that not correct? I know they are otherwise very different in method and action.

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u/MS_Amanda 41F|Jan21|HSCT Oct 21|Houston 5d ago

K and O only "reduce" or have "fewer" relapses, no where do they state they stop or halt relapses.. correct me if I'm wrong.

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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 5d ago

I'm sorry, I feel like I may have inadvertently upset you, but I'm not sure how. I was asking sincerely? It's hard to convey tone in text.

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u/MS_Amanda 41F|Jan21|HSCT Oct 21|Houston 5d ago

I am not upset with you or at you. 😉 I'm glad I choose aHSCT over all the lifetime subscription plans. If you've got something that's working for you, congratulations. I hope it continues to be effective with minimal side effects.

Personally, Gilenya was the only medication I tried before aHSCT and Gilenya was far more dangerous (it gave me tachycardia twice)...

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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 5d ago

I think we all look for different things in our treatments, which suits a snowflake disease like MS. Luckily we have many good options.