Hi guys. I have recently been diagnosed with RRMS after just over a year of investigations which were triggered by what I now know were 2 relapses a year apart. Symptoms include weakness in arms and legs (foot drop)/lack of grip/pins and needles/numbness/Lhermitte’s sign/brain fog, and now I have been made aware of other kinds of symptoms MS can cause, I think I may have experienced others too. 2nd relapse is what confirmed the diagnosis after being hospitalised and put on steroids. Have lesions on brain and spine. My symptoms have fully gone after both relapses (I think anyway???). My MS is currently relatively mild (so I have been told by the neurologist) and I am on Ocrevus, having had my first treatment just under a month ago. I have taken it relatively well but the one thing I am struggling with a little is determining whether I am experiencing MS-related symptoms or just being hyper-sensitive to any slightly altered sensation in my body post-diagnosis. I find it really hard to know when I’ve only ever lived in my body, so I have no “normal” to compare anything to and a lot of the symptoms can sometimes be explained by lifestyle factors too. I want to know if there is a way you guys can tell a difference and when those symptoms might indicate a relapse? The 2 relapses I have had have been obvious due to not being able to use a given limb properly so I knew something was wrong. But that doesn’t mean they will all be this obvious and I don’t want to miss something and not act when I should!!! Additionally, can you experience symptoms intermittently even if you are not having a relapse? Any tips would be greatly appreciated and I hope I’ve articulated this well enough!! Thank you in advance. X
Yes, that’s something that most of us will be familiar with. One thing I will say about my own MS troubles is that they have (like yours) been both obvious and weird - i.e. very difficult to mistake for anything else. If something less obvious comes up, I steadfastly ignore it until it either goes away or moves into the obvious and weird category. Mostly they go away. I do not think there is a clear-cut answer to your question, though. It’s just one of the many puzzles of having MS.
Oh yes, I’ve had exactly this kind of feeling since I was diagnosed a couple of years ago.
We are told that a relapse has to be a new symptom and last at least 24 hours. But for example, what about a symptom that comes on for 30 minutes or so every evening? That was classed as a relapse in my case.
However, I have little “episodes” every day that I just assume are MS but not relapse. It is all weird sensations - pins and needles in foot, then the other foot, numbness, waking up with pins and needles in hand… it goes on.
Equally, I’ve had symptoms that looked just like MS but were not. I had foot drop, medics thinks it was not MS. And I had horrible vertigo - also not MS apparently in my case.
So it’s just a puzzle. I think the definition of relapse may be more a kind of threshold for action. If the treatment is steroids, given they have side effects, perhaps they wouldn’t want to prescribe unless the symptom is a real problem. Also it’s useful for comparing drugs to have a way of “counting”.
But yes - there is a lot of what my neurologist calls everyday “noise”.