I have a few posts here but as I long suspected over two years I’m ppms. Sadly non active and aggressive. I have a lot of multiple attacks happening but few lesions.
Started in 2022 and never let up. I fact my initial ms was so bad I left work for a year. Came back but struggling. My symptoms are all over and now I’m getting slight foot drop and it’s only been two years.
I’m 38 and scared as I read the horror stories and people on here who have passed from it. I don’t know what to do. Should I try hsct? I’ve read a lot but I can’t believe in 2024 ppms is that untreatable. I’m declining fast
My understanding is that HSCT doesn’t work as well for PPMS, but can halt further progression. This is probably the best place to ask your question.
UK HSCT for MS & Autoimmune Diseases | Groups | Facebook
Hi,
Sorry you have had such a difficult time with this.
I had a couple of ideas reading your post.
Are you eligible for Ocrevus? I know it is suitable for some - not all - people with PPMS. I wonder if that has been checked.
Secondly, can you get yourself onto a clinical trial? There are ongoing trials for progressive MS.
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The way I take it is it’s the best time ever to to have MS. There has never been more that can be done so reading scare stories online over and over isn’t useful.
I know myself you put “primary progress MS” into google and there a bit below where AI offers up “How long before a wheel chair?”. Thanks AI. It’s built on old data.
Ocrevus is a game changer for us (PPMS, included) and I’m one of the first in the UK on it, trust me the NHS isn’t dropping with all the other stuff £40k a year on something that doesn’t provide benefit.
Speak to processionals not us though.
Also I’ve had high stress periods where I’ve been out a month. I though “well this is it now I can’t do anything now PPMS so this is permeant”, not so, there are active periods which can subside.
Highly annoying is losing a week to it being mildly warm for some reason. Or Working then Friday comes then you wake up and it’s Monday morning, work again?
Gallows humour is useful. I call the other MS “Diet MS” (If anyone’s offended I’m sorry, obviously know bit more than most how it is, just humour is useful).
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I am older diagnosed at 62 but I have probably had ppms for at least 10 years maybe much longer. Keep up exercise this definitely helps and look into all research and sign yourself up .
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