Last reply 4 months ago

I was diagnosed with RRMS in 1983 after a bout of Optic Neuritis in my left eve from which I recovered 100% with out medication. After that I only had one other exacerbation and that was 10 years later in 1993 when I had double vision,this symptom also resolved by itself without medication. I do have some other symptoms that have progressed very slowly over the next 25 years but I have been able to manage them and I don’t have any mobility issues I think my EDSS is 3 or 4. My question is why am I still classified as RRMS if I haven’t had a relapse in 25 years?

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7 months ago

@crisswell , that’s a good question. I find the transition from Relapsing-Remitting MS (RRMS) to Secondary Progressive MS (SPMS) to be very subjective.

In your case, would your lack of relapse activity been down to benign MS, the effective use of a Disease Modifying Therapy (DMT) or you’ve transitioned to SPMS? I don’t believe that question can be answered, so you continue what you’re doing as it must be working – quid pro quo (is that the right Latin phrase?).

If you were to have your diagnosis amended to SPMS, you may not be eligible for any DMT. Would you want that?

So, retaining the RRMS label ensures the status quo (more latin!)……….

7 months ago

Thanks stumbler, “If you were to have your diagnosis amended to SPMS, you may not be eligible for any DMT” yes maybe that is the reason that doctors are reluctant to change a diagnosis from RRMS to SPMS.

7 months ago

I read this article about the transition from RRMS to SPMS. It doesn’t say anything about increased retinal thinning which is the only sign of disease activity in my latest exam. If I haven’t had a relapes in 25 years and my MRIs over the past 4 years show no changes or disease activity is the the retinal thinning caused by a different process than errant T and B cells getting through the blood brain barrier and if so would would the DMTs do anything to change this process?

7 months ago

Hi @crisswell
I got my neurologist letter this morning from my last meeting with him.
He stated that I Have secondary progressive with relapses.
Not sure if that is something that could benefit yourself but it leaves the door open for meds which may or may not help but it’s better than nothing.
Might be worth a thought.
Wish you all the best.

4 months ago

@chriswell i saw your post and thought it was really ice to see sommeone doing well with secondary ms, may I ask yout age and do u belive ur diet and exercise regimr have kept u fit?xx

4 months ago

As far as know, Retinal thinning, break, hole, detachment are totally diferent from O.N. and M.S. those could be because of nesrsightness or genetic.

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