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No relapses but things getting worse

hi all I’ve had rrms since 2012 and up to now had no relapses I’ve had 3 mri scans which show no new lesions. But here’s the thing my balance, memory are getting worse so is just a natural progression of ms. I’m taking avonex dmd from the start which I’m sure does help. Just wounded if anyone else has these same problems. Neil

Hello Neil

It’s really tempting in such a situation to decide that maybe you’ve moved on to secondary progressive. But don’t. I kept thinking I’d stopped relapsing and was progressive for years before I actually was. Then I have a big nasty relapse. That told me it was still RR.

Even now, my neurologist decided that I was SP then two years later I started relapsing again. So for all I know I’m still RR or possibly progressive relapsing.

Just stick with your DMD, or you could change to a more effective one. And try to ride out the symptoms.

Sue

Thanks for that sue got to be honest I’ve been thinking along that line myself . When I went to see my consultant she asked me if I thought I was getting worse serenely my balance. She gave me a quick memory test which I scored 29 out of 30 she said my memory could be do to fatigue which it could be because on a bad day I have all on remembering what day it is. Some days all this can get me down and thinking how it will affect me in the future. Neil

I hate the whole idea that a neurologist can give you a ‘quick memory test’ and decide on the basis of this test that you have no cognitive problems when you know yourself that the cognitive issues are there, real and affect your daily life. Obviously fatigue makes memory and other cognitive problems worse, but when you know that on a good day you can’t always remember stuff, sometimes you just want someone to acknowledge the issue. Don’t be too ready to jump into the progressive pond. You can only know years later (and after you’ve stopped taking a DMD) that you are progressive or not. If you don’t have any significant side effects with Avonex and it’s working in terms of you having no relapses and no new lesions, stick with it. Disability progression is different to disease progression. So you probably will have increased physical and mental problems over the years even outwith relapses. Just stick with the RR label for now. Sue

I’m with Sssue on this one. I’m less able than I was, and my memory is so bad sometimes that I can’t remember whether I’ve had painkillers, and if so, when - a potentially dangerous situation. My speech problems also seem to be getting worse. I know that these problems are often worse when I’m tired, so I won’t label myself as SP till my neurologist does.

As for 29 out of 30 on a basic memory test, that’s meaningless. Any one of us could probably do that on a good day. Having said that, it’s not uncommon for cognitive ability to fluctuate, so don’t assume that memory issues mean that you’re SP.

If Avonex is working for you, stay with it.

I was diagnosed with benign MS in Sept 2008 although my medical history showed I probably had the first flare-up some 20 years prior – when I had been in my early 30s. My symptoms were wildly variable for the next nine years but my specialist nurse told me that they were not relapses when I asked about the day to wild variability in my movement, balance, erratic sleeping, feelings of distance/cloudiness and unsteadiness that I had at different times; she told me I was “textbook MS”. There were also times when I wasn’t even able to sit up in, or on the side of my bed for two-or-three days at a time. This variability continued until March 2017 when I had similar symptoms to those which put me in hospital originally. I managed to get to hospital strongly suspecting a relapse and was kept in for tests and it was eventually confirmed to be a relapse. The Neurologist who saw me this second stay then reviewed my reports from the specialist nurse and told me that she thought that I had been having minor relapses hidden by the variability and that I was either now in or entering, second stage and that I probably wouldn’t have any further relapses but would gradually decline. Since then, the wild day-to-day variability has virtually disappeared but my symptoms are somewhat worse now than when I first recovered from the relapse, which seems to agree with what the neurologist told me. I don’t know whether this personal history helps you at all or only clouds things even more for you – welcome to the world of MS. Just slide along with it and all will eventually make itself clear in time, just don’t let the b’stard thing grind you down or its won. Take care, Paul

Yes Paul I once heard on the radio back before I was first diagnosed ( you have ms, ms has not got you) I often think back to the day I heard it because I was still waiting for my first mri results and it gave me a greater determination to get on with my life. Neil

I was diagnosed with RRMS in 2005 & my 1st and only symptom prior to this was a numb face, but i was too busy for my neurologist appointment so didn’t go! Since my diagnosis, with 2 big relapses hospitalised for 2 weeks both times within 3 months of each other, I have only had small sensory relapses with numbness often getting worse at times with restless legs as well, but that’s it mostly. I have annual MRIs and as far as I know I’m still classed RRMS. I’m one of the lucky ones. I eat healthily and try to be as active as I can. I have MS, but MS does not have me…yet!

My current diagnosis is “Secondary Relapses With Relapses”. That’s what’s written on all correspondence to me from the MS clinic, my hospital medical notes and any correspondence that my GP receives.

I actually had an appointment this morning with my neuro consultant and queried my current diagnosis.

The consultant said,

“Just because someone has progressed to SP doesn’t mean any relapses will then stop completely forever, and further more if someone does still relapse doesn’t necessarily mean they are still at the RR stage”.

MS, he said " is just so so varied" .

So there we are, it’s all so very clear and simple to understand.

On a side note :

My sister is officially regarded as RR and had been doing very well for over 15 years, yet out of the blue early last year she had a devastating relapse and is now far far worse than I am, fully confined to a wheel chair, no bladder control and has to self catheterise and no use of her left hand .

In my opinion the title of your MS diagnosis doesn’t make one bit of difference, you could go for the rest of your life staying under the radar and managing your current symptoms or be the next unlucky sod and take a big hit that is totally life changing.

MS just dont care who you are or what your title is !!

And my current diagnosis is Progressive Relapsing. It was changed from Secondary Progressive when I began relapsing again. So very clear, so very easy to understand. If there are about 100,000 people in the U.K. with MS, does that mean there are in fact 100,000 variants of MS?

Thanks for that sallum since my diagnosis in 2012 my main symptoms we’re numbness in my legs which on my bad day are worse. But I don’t class these as relapses just my bad days