I was diagnosed a few weeks ago, had active inflammation and heightened sensitivity in fingers in June which comes and goes still sometimes but now I feel a strange feeling in my mouth and lips on and off past couple days or so, has anyone else had a relapse right after the other??? So scared:(
don’t be scared, it appears to be quite normal to have a symptom that lingers after a relapse which seems to be the case with that strange feeling in your mouth and lips.
keep coming on this site.
keep your GP updated because it is good to have one health professional with an overview.
if you get bored come along to the Brain Fog thread on Everyday Living, then you can see what true madness really is!
Hi, I’m no expert, as I was only recently diagnosed (mid - June). I’ve seen my MS nurse once & she gave me their number to ring if I had questions like this, or any concerns. She told me that it would take some time for me to be able to work out what was a new symptom, an old symptom, what was a relapse and what wasn’t. Equally, she said I’d learn over time what was down to MS and what wasn’t. What I took from that was I’ll ring them if I’ve any uncertainty / questions. Can you do the same or not? Healthcare professionals need to understand where your body (& head) is at.
I’m mostly feeling distressed by the after effects of the diagnostic lumbar puncture which immediately gave me ‘heavy legs’ the numbness & tingling in them has severely affected my ability to walk far, this has lasted 9 weeks so far with very little improvement. This is scary on top of the MS news, has anyone else experienced this?
When you’re first diagnosed and told it’s ‘relapsing remitting’, you have the idea that a relapse is a clear cut stand out event that you’ll be able to tell exactly when it starts, and more importantly, when it’s remitted.
But in fact, relapses and remission are a lot more fuzzy than that. After 22 years, you’d think I might know whether I’m starting a relapse or not. You’d think I’d be aware that the relapse is over. But I’m not.
A relapse can linger, can change, can take so long to recover that you think it’s not going to, until one day you realise ‘I can feel my fingers!’ Or ‘my left leg feels better!’
Eventually, you’ll perhaps be more aware of how your body behaves. I know that last year I very clearly realised that a relapse had started on the day it began. And coincidentally I had an MRI that day. So I noticed symptoms that were backed up by clinical evidence (the MRI lit up like fairy lights at Christmas). But this was unusual.
If your MS nurse TTBS thinks that eventually you’ll be that aware of symptoms and relapses, she’s never been in my head (stating the obvious I know)! Maybe you’ll be able to tell what’s going on. But like Carole said, relapses can linger and change slightly.
As for your LP reaction Highway51, hopefully the symptoms will calm down and ultimately vanish. It may take some time, but I don’t think that permanent damage is that likely from an LP. It could be either that the LP disturbed the nerves in your spine and they’ll take time to calm down, or that you actually started a relapse simultaneously with the LP. It is possible, stress can cause a relapse and there’s not much that’s more stressful than an LP.
MS is a bugger of a diagnosis. It will take you all time to adjust to the world you now inhabit; a world that includes MS and the subsequent uncertainties that accompany it. When you do make the necessary adjustments to your brain, you’ll perhaps relax a bit more into the disease.
Whatever you all do, think about disease modifying drugs (DMDs) and discuss your options with your MS nurse / neurologist. The aim of a DMD is to reduce the number and severity of relapses. So with luck, you’ll experience fewer relapses in the future.
Given my career, I’ve adopted a scientific (& probably too analytical approach), but at the moment it’s working for me. It helps me feel I’m more in control over something that’s new, unpredictable and scary (at worse). I know with greater experience of MS and familiarity those feelings will change & I’ll be less structured in my approach.
I totally get your concern daria19. Your MS nurse, if you’ve got one should know where your head (& body) is at so they can better meet your needs.
Thanks everyone x