Blurring distinctions b/w types of MS - My MSAA Community

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Blurring distinctions b/w types of MS

erash profile image
6 Replies

For BillD999 or others interested and Jesmcd2 Fancy1959 johnMSAA perhaps another topic if time for the expert to address?

msdiscovery.org/news/new_fi...

multiple-sclerosis-research...

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erash profile image
erash
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6 Replies
Jesmcd2 profile image
Jesmcd2CommunityAmbassador

BillD999 hi erash sent you some great articles about the difference between RRMM, SPMS, PPMS and PRMS. ☺ Here is another from MSAA

mymsaa.org/ms-information/o...

I was dxed 2yrs ago yesterday, it turned out not to be good day. Anyway, my Neuro still hasn't told me what kind l have..

Jes🌠

johnMSAA profile image
johnMSAAPartner in reply toJesmcd2

Thanks for including that link, Jesmcd2 - it's a good one.

- John, MSAA

BillD999 profile image
BillD999

@erash, thank you, I had not seen these, although I have done a bit of reading in this area. The real mystery seems to be why, if RR and Prog MS are so similar, certain meds are effective only for RR. This may not be true for everyone, and I know many doctors will prescribe RR meds for anyone diagnosed with MS, esp right after being diagnosed. I know I went through that, several years on Copaxone & Rebif even though it was pretty clear I was not having relapses. Neither was effective for me.

Also interesting, in the context of the discussion of MRI, is that my MRI results since being diagnosed in 2005, have been stable, very little change. Yet the progression in my symptoms has continued. Of course it is possible that some of the newer machines might detect changes not revealed in the tests I had.

erash profile image
erash in reply toBillD999

Again BillD999

I think part of the reason is whether research was done on RR or pp MS and the duration of the studies. Much easier to count # of new lesions on successive MRIs in RR than to measure small slow EDSS declines signifiying inflammatory changes in PP MS. Only recently have they begun measuring brain atrophy on MRIs as a marker of progression. However, they now think inflammation begins even before lesions are detected.

Also, most of the 1st generation meds target lesions, myelin, where newer meds address or also address inflammation

The understanding of the pathophysiology of MS has evolved.

And, I am only telling u my understanding of what I've read or heard in webinars. We will have to stays Tuned and hopefully experts can give us more insights

Have a super wonderful day 😊

shortyPPMS profile image
shortyPPMS

I have heard the suggestion that the response to DMT'd in PPMS may take longer to become apparent, perhaps 10 as opposed to 2 years, and so doesn't show up in trials done over a few years. Hopefully someone will investigate this. Have a good one everyone.

johnMSAA profile image
johnMSAAPartner

Very good erash - a possible topic/question for our MS expert to discuss during the AMA / "Ask Me Anything" on March 29th, right here on My MSAA Community!

- John, MSAA

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