Nobody Seems To Know If I'm Relapsing

[thatsallfolks89]

Hello,

I was diagnosed with Remitting-Relapsing MS in 2018 after being diagnosed with Optic Neuritis in 2017.

Since early Saturday morning, I have had severe lightheadedness, lethargy, a headache that won't go away and muscle pains along with pins and needles and itching in my legs.

I rang the MS nurses this afternoon and am on the list for a callback in the morning but I am not feeling optimistic as usually they write off my symptoms as being parent-related and have nothing to do with MS in general.

I'd just like to know if it is and what I can do about it. I am still clueless about this condition even after all the years I've been diagnosed with it .

Have you looked on the MS Society's (UK) website? I find it helpful. A neurologist diagnosed me with RRMS in 2022 but I am still in limbo land.

Hello
Really sorry to hear that. I think I am relapsing at the moment too. My nurse always makes me have a uti test first - had that Monday and negative so now in limbo land. I always recognise a relapse as the fatigue is so horrific. I never know what to do but generally just manage it myself. I’m in the process of changing medication so in closer contact to my nurse than usual. Hope you feel better soon.

@misscockerspaniel yes I've looked on both the MS Society and MS Trust and they have stated if a symptom lasts 24 hours then it's thought to be a relapse.

However, the MS nurses at my hospital have brushed it off and have said it doesn't sound like MS and to get checked out. All I know is something is off but I can't seem to get anyone to listen.

@Runninghappy sorry to hear you think you might be relapsing too. I have slept like a dog all day and that's unlike me. DH had to ring in sick at work to look after the children. Hope you feel better soon.

I know when I have a relapse as I have such bad fatigue. Usually I go to the gym every day and run on top and I had to sleep after driving 10 mins to pick up a click and collect. My new symptoms are pains in my neck and back and not able to move very well. Perhaps speak to your GP if they are more helpful. I find the Ms nurses don’t seem to know much about MS!!

Saw this and thought of this thread. Hope you are feeling better, Op.

Case study: am I having a relapse? - by Gavin Giovannoni (substack.com)