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relapse ?.

Thought i had posted this earlier so forgive me if i’m repeating myself. for ,for over a fortnight i have been feeling absolutely shattered,after pottering in my garden or atempting any housework i feel so exhausted i have to lie down and end up falling asleep,apart from the tiredness i have had a headach for about 6 days now and i’m often having to go to the toilet quite prompty.while i am labled as PPMsi have felt this way a few of times in recent years,it was suggested to me this could be a relapse as there is a relapsing progressive condition any thoughts?.

Mark.

Mark we can relapse despite what you’re led to believe. It’s not like RRMS where your symptoms come and go but we get episodes where our symptoms get worse for a while. Obviously your fatigue is unbearable at present but do yourself a favour and listen to your body. If you need to lie down and sleep, then do so. It doesn’t matter if your house isn’t spotless, a bit of dust never killed anyone.

That’s the advice my MS nurse gave me when I saw her during one of my relapses. I’ve had times where I’ve slept solidly for 72 hours, only walking for a wee, drink and my meds. But after that I’m back to normal again. If your jobs are getting you down, ask a family member or friend to give you a hand. If you can afford it, it might help to get a cleaner to help.

I did that and have kept her for just an hour or two a week. She does the heavy jobs I can’t like changing my bed, hoovering the stairs etc. That way I can potter along doing what I’m capable of during the rest of the week and it’s reassuring when I’m struggling knowing it’ll all get done at some stage.

Be kind to yourself.

Cath

Hi Mark

Yes, there is a Progressive Relapsing variant of MS. But it is really part of the RR/SP type of MS as far as I know.

So people with PPMS can have relapses where they feel especially lousy for a while, then hopefully revert to the more usual (for the individual) standard of rubbish.

But the type of MS which includes RR and SP can also become PR. This is what’s happened to me. I was RR from 1997 to about 2016 when my neurologist reluctantly declared that I was now ‘in a more progressive phase’. By this I took him to mean SP. and indeed I hadn’t had a real relapse for a couple of years by then. I think he was reluctant because he was a neuro who wanted everyone on a DMD if at all possible. I seemed by then to have run out of options for DMDs (he used to write them all down and one by one draw a line through them because of my history with side effects).

Then last year I had one smallish sensory type of relapse (more like the kind of relapse you might get with PP I think), where everything just felt worse for a couple of weeks. That was followed by a genuine, real relapse of the kind where my legs just gave up on me. Bizarrely (and fortuitously as it turned out) the very day it started, I had an MRI already booked in. So the neurologist had clinical evidence of new inflammatory demyelinating lesions. I took steroids for that relapse and they worked better than ever before. Not only did the relapse completely remit, it actually seemed to help improve my long-standing foot drop. When I saw my rehab neurologist a month later, he was astonished that the dorsiflexion of my right foot had improved, he checked his records from 7 years before and said he’d never seen improvement like that before. It didn’t last, but for a while I could almost walk without FES or any kind of orthotic device.

So it was confirmed, I’d gone from RR to SP then had it confirmed that actually I was PR. Not that it helps that much, just means that now I can have further disabling relapses in addition to general gradual progression. I’m soon to restart Copaxone, I’m not absolutely certain that it will actually ward off further relapses - it stopped working for me about 13 years ago! But it’s worth a go.

Sue