Last year I had a huge attack as my first MS attack, inc sudden loss of strength in both arms coming after vertigo and a VI nerve palsy double vision. I was recovering well, but stll get spasms in feet at night sometimes and they wake me up. My tremors have subsided and cramp subsided. My aching back and legs have eased for the time being. I twitch still occasionally and some twitches feel deep inside my lower back muscle. Constipation is intermittent. I get tired easily and try and need a nap in the afternoon even though i’m only at college part time. I’ve got this weird left left/ left thigh sensitivity at the moment and hope it doesn’t go into a relapse. I am seeing an MS neurologist but I think I have a form of Secondary Progressive with inflammory RRMS. I’ve only been diagnosed for 11 weeks.
It is extremely unlikely you have developed secondary progressive MS immediately after being diagnosed. The typical timescale is ten years or more!
To reassure you, many people with RRMS - perhaps even a majority - have residual symptoms even between attacks (relapses). Having some symptoms that never go away does NOT indicate you have SPMS - it’s extremely common. It’s a misconception that remission means “feeling fine” - as if you didn’t have MS. For many people, it doesn’t; it just means being better than you were during the relapse.
This is a good-news/bad-news story. Although it may come as a shock to you that RRMS very often does not mean going back to normal in between relapses, the bright side is that this pattern does not indicate you have SPMS. At risk of confusing, RRMS is also a progressive disease, despite not having “progressive” in the name. This means there does tend to be some lasting damage from attacks, and everything does not go back completely as it was (although it still might, if you’re lucky).
It’s still very early days for you. When you’ve had more time to adjust to your diagnosis, you will realise ongoing symptoms - particularly fatigue - are a fairly “normal” aspect of RRMS, for a lot of people, and don’t mean it has already become, or is becoming, SPMS.
Hope this helps,
Tina
I went to my GP today to get a referral to ENT. I said my initial diagnosis on RRMS doesn’t sit with me well as I feel it was much more a servere type of MS. It was like he has pleasure in saying “You have been diagnosed with RRMS”. i said I know I have and I’m not disputing that, it was my ititial diagnosis I am disputing. He was looking at me like I was not accepting my MS diagnosis. My symptoms were very servere and I feel lucky I have recovered to the level where I am now. Some of these GP’s have no idea…
Severity of the relapse has absolutely no bearing on the validity of the diagnosis.
Relapes can be mild OR severe, and last from just days, to several months. It’s just luck of the draw. Having a mild relapse doesn’t mean they’ll always be mild, but having a severe one doesn’t mean they’ll always be severe. The fact you have recovered significantly, albeit not completely, makes it very unlikely you have a progressive form of MS, as they tend to be characterised by continuous deterioration, without obvious attacks - and without obvious recovery either.
With everything you’ve said suggesting you’re much better than you were, it sounds fairly typical of RRMS. You were unlucky for your first relapse to be a severe one. However, there’s no rule that early relapses are generally mild. You can start with a big one, just as much as with a small one. Although it is possible you’ve had mild relapses in the past, but didn’t recognize them for what they were, because obviously, you wouldn’t have suspected you had MS.
I was diagnosed following a relatively big one that lasted several months. But looking back, I realised there had been smaller ones in the past, which I’d ignored, or put down to some weird bug or something.
Most people get diagnosed when their MS has been pretty active, because if it hadn’t, they wouldn’t have been at the doctor’s in the first place! Nobody goes to the doctor when they’re feeling fine.
Tina