Hi,has anyone else had this ? Had MS for 23 yrs diagnosed as secondary progressive, now changed to relapsing remitting, more DMT available but which one is the best .??? Please let me know your thoughts
Best to listen to your Doctors rather than us on here without full access to your case notes. Unusual to go from SP- to RR- diagnosis: it implies the original diagnosis was wrong and suggests your disease is not progressive between relapses. They don’t like admitting they got it wrong so the review likely centres around something very specific.
Has anyone heard of other cases going SP- to RR-?
Hi I’m not asking for a medical opinion just personal ones on individuals DMT
If I had been diagnosed correctly things could be very different for me
Dr Aaron Boster has a long playlist of videos on choosing a DMT. There may be something useful for you there, and at least the right sort of questions to ask what you yourself wants from a DMT (risk v efficacy) and what to ask your neurologist.
https://www.youtube.com/playlist?list=PL3a4GpjWLtCgbl2GjHQuMYzrMbwGyJVQ7
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Melly,
Have you looked at the MS Decisions pages on the MS Trust’s website?
It’s an excellent place to read-up on DMDs.
Many have found it useful.
I have only used Rebif myself, so am no expert.
Ben
Best place to start are the web pages for the MS Trust and MS Society. Facts are a lot more useful than random experiences. None of us have knowledge of more than a few of the possibilities and it is a changing environment.
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Crumbs - that’s a new one on me. I imagine you are pretty upset about it, as I certainly would be in your shoes. So many years of missed opportunity. Water under the bridge now, but damn, that’s not good.
I was dx not long after you. For what it’s worth, I was on Avonex for 10 years and now Tysabri for 10+ years and counting, but, as others have said, individual experience probably isn’t much use to you in your choice; everyone’s different and so is their MS and, besides, your circumstances are particularly unusual.
No,I will do though,thanks Ben