questions

New diagnosis and before diagnosis
1

I thought I had quite a good understanding of MS, well as far as you can understand it but now I realise I have no idea. I’m in the system with mild symptoms that are not too bothersome at the moment but I’m finding myself questioning a lot of things that are probably nothing to do with it as I’m sure a lot of people do.

I always thought that with MS you would have a relapse, it would last for however long it decided to stay and that hopefully when it left you would recover somewhat, although some symptoms may remain after each relapse. (with RRMS) Do the symptoms that remain stay with you 24/7 or do do you get any respite. So if numbness was a symptom that stayed with you would you be numb all of the time with no let up at all?

What confuses me is the symptoms that appear weeks, sometimes months after the first one and that some continue to appear, for example pins and needles on and off for a few weeks, then suddenly twitching starts, then again a few weeks later the MS hug rears it’s head and so on? Is this one long relapse or loads of little ones?

I also thought that as long as the relapse was active your symptoms would remain pretty constant, not coming and going every few days or be bad in the morning, go off during the afternoon and be back by teatime whatever activities you are doing or even not doing.

Also the MS hug, I read about people having it unexpectedly with no other symptoms, is this not then a relapse if you haven’t had one for weeks or months?

Any insight into any of my misunderstandings would be much appreciated.

2

The biggest problem with MS is that it does whatsoever it likes, when it likes, to whomever it likes.

Yes, you are right that a relapse can either entirely or partially remit. So you could have symptoms that remain. (What are feet supposed to feel like anyway? I can’t remember!)

And some symptoms can come and go at will. For example, spasms have plagued me for years, since before I knew what a spasm was. I’d be sitting in the evening and my legs just wouldn’t stay quite still. A horrible sensation, and one I lived with for a good long while before figuring out what it was, and got some drugs to help (Baclofen in my case does the job). It wasn’t (and still isn’t) all the time and wasn’t necessarily connected to a relapse.

So, you feel like you’ve got a handle on what MS is going to do to you, and then it moves the goalposts. You then feel as you do, that you basically know nothing and other people will know loads more. They will and they won’t. What some of us have discovered over years is that when we think we know where we are with our own version of MS, it will change. And we’ll find that actually we know nothing.

Mine has changed recently and I’ve even had my Rehabilitation Specialist Neuro scratching his head, checking his notes from 7 years ago and saying ‘I’ve never seen that before!’

So welcome to the ‘know nothing club’.

Sue

3

I’ve been diagnosed with PPMS. I’m not supposed to get any remissions but I have found that some of my symptoms have gone away (drop foot) while others get worse.

It’s a mystery.