By coincidence I had an appointment three weeks ago at my local MS clinic. For once, I had a relapse to report. This was actually great timing, as Dr was able to check leg strength and indeed confirm that my former good right leg was now the weakest. Thus this becomes a clinical 'sign' as opposed to a patient reported 'symptom'.
In my experience, Doctors love signs, they're tangible, definite and often quantifiable. Symptoms tend to be vague and a bit woolly 'patient reports difficulty walking' or 'feels tired'. Honestly, we do our best to be clear, but sometimes you just want to say 'I feel rubbish!' Anyway, having a clinical relapse recorded on my notes ticks boxes when it comes to qualifying for treatments. Not that it makes any difference right now, the only thing I was offered was a course of steroids, which I refused. I'm told steroids make no difference in the long term and certainly won't help with my mission to improve my lymphocyte count. Talking of which, had another blood test for good meaure.
As you probably know, MS usually starts off with definite discrete attacks termed 'relapses' or times disease is 'active' interspersed with periods of good health 'remission', so-called 'relapsing-remitting' (RRMS). Some people experience incomplete recovery from relapses 'residual symptoms'a nd many later notice a gradual worsening of their MS but are unable to recognise discrete relapses, so-called 'secondary progressive' (SPMS). Thing is, when you have so many existing symptoms it's kinda hard to pick out discrete relapses from the background norm. For example, all I know for sure is I've had no remission since early 2012 ie that was the last time I was well.
For completeness, I'll mention a third type of MS termed 'primary progressive' where there is never a phase of discrete relapses, just slow deterioration from the start. For reasons unknown, males are more likely to present with this type. Furthermore, men with RRMS experience fewer relapses than women. Aha, hormones you say. And you're probably right, especially when I tell you that women are unlikely to experience relapses during pregnancy.
We also know that slow deterioration (why is it called progression?) takes place from the start, regardless of whether symptoms were noticeable enough to be detected as a relapse. And likewise 'relapses' continue right to the end, regardless of whether they can be detected or not.
So if MS is one disease and both disease processes are there from day 1 to the end why do we insist on these artificial labels? It's all because back in the late 90s, when beta interferons were first being developed, MS had to be sub-divided into different diseases in order for RRMS to qualify as an 'orphan disease' affecting <200,000 people in the US thus making it worth drug companies investing $$$$ developing $$$$$$ treatments:
https://en.m.wikipedia.org/wiki/Rare_disease
http://multiple-sclerosis-research.blogspot.com/2016/10/clinicspeak-whats-in-name.html?m=1
That was 20 years ago and thanks to that we now have loads of effective treatments for RRMS, or early MS where disease is generally at it's most active and easiest to treat. Which leaves those of us not ticking boxes for RRMS with zilch. MS is no longer considered an orphan disease so perhaps it's time to ditch the artificial labels.
