MS Society UK | Forum

Is it progressive?

I was diagnosed with RRMS 3 months ago, after being misdiagnosed a few years ago. For a few years now I’ve had headaches and neuropathic pain, had a flare 3 months ago and went from long distance running to a EDS of 6.

My question is this: when do you know MS is progressive? All symptoms (burning, pain, tremors, etc.) acquired during flare 3 months ago has remained and does not go away at all.

Currently on Gilenya, next MRI only in May (previous scans had new lesions every time, hoping the meds will stop this):blush:

Ask your MS Consultant & Nurses your question. Your condition may have changed: You know your own body best of all, if you think it has changed, don’t wait dutifully for the next scheduled appointment - ask to bring it forward.

Like you, I was misdiagnosed for years. Your frame of reference goes back years but to your MS team, your case is 3 months old! :flushed: I challenged my (lack of) treatment which resulted in a case conference which among other things involved looking back at 10 years of scans etc. to look for clues. Amazingly, they hadn’t done this before…
Graeme

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It’s a very common question Ani, ‘is my MS becoming progressive?’, or ‘was I misdiagnosed with RR, am I actually PP?’

I remember about 12 years ago wondering if my MS had changed from RR to SP. It hadn’t. I had several very clear relapses after this time. One, the worst, almost exactly 10 years ago after which I couldn’t walk anymore (or only a few feet with an orthotic or FES plus walker).

The problem is that our relapses don’t always completely remit. So over time we become progressively more disabled. Unless that is we’re on a good (I mean suitable for us as individuals) DMD that prevents relapses.

I wasn’t, I’d been on Copaxone and that stopped working. I was going to start Betaferon (back in the days when there were only 4 DMD options licensed) but then had my first episode of (possible/probable autoimmune) hepatitis, so couldn’t start it. I thought ‘it doesn’t matter that I’m not on a DMD as I think I’m probably SPMS’. I wasn’t and my subsequent attempts at DMDs once they became possible were failures due to side effects.

Even now, I’m still not properly secondary progressive as I have occasional relapses. One of these was clearly identified as such on MRI (as luck would have it the relapse began on a day I had an MRI booked). Other MRIs have shown differences in lesions. I’m now classed as Progressive Relapsing. But am so disabled and have had MS for so long that I don’t qualify for the only DMD licensed for RPMS; ironically this is Extavia, aka interferon beta 1b, aka Betaferon.

(It’s my MS’s 25 year birthday in January - yay, my quarter century, think I’ll have a party, only I don’t have enough friends, plus I cant dance, drink much or stay up late, so maybe just a tea cake!)

If you are genuinely still relapsing remitting, this plan will hopefully work and you’ll have no, or less relapses. Or any that you do have will be less severe. This in turn will (again hopefully) prevent serious disability.

I suspect that you are still in the process of remission from your relapse 3 months ago. (I personally am not keen on the word ‘flare’, it makes a relapse seem less severe!) Sometimes it takes a very long time to recover from a relapse. Remission seeming so slow you don’t realise you’re getting better until one day you wake up and say to yourself ‘my left leg/arm/fingers/etc feel better … the burning/numbness/pain/tremors are improving’. Eventually you might find you’ve forgotten what the relapse felt like, or you’ve adapted so you can’t remember what it felt like before. For myself, I can’t remember what feet ‘normally’ feel like. I’m now getting to the point where I can barely remember what it’s like to walk, let alone run, except in dreams.

I assume you only started Gilenya within the last couple of months as it takes a while to get the drug organised.

So, I would suggest that you continue to count yourself as relapsing remitting, and keep taking Gilenya, unless you have more relapses while taking it, ie if it fails. Your MRI next May should give you and your neurologist good indication of where your MS is going and how effective the Gilenya is. If it’s not effective enough, you’ll be able to switch to another more effective DMD.

Sue

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Excellent advice, as always, from Sssue. Relapses come in many forms. For me, I only get major ones about every 4 years, and the issues they bring can last anywhere from 3-18 months. Minor issues can occur if I push myself too hard, am too stressed, too tired in general, or the weather doesn’t cooperate.

Discuss it with your medical team, by all means, and keep taking your drug of choice, but don’t assume that you’ve progressed. Generally speaking, they don’t confirm SPMS until you’ve gone several years with no noticeable relapses and just a steady decline. I’d have to agree with Sssue on this – You’re still in remission.

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THANK YOU, Sue!! This was tremendously helpful (and reassuring) and I do feel that I understand a bit better now. :hugs::heart: