Don’t get on here as much as I’d like due to weakness in back means I can’t sit at computer long (I’m having some acupuncture to help the pain this afternoon I hope).
Anyway I know this seems like a daft question but does anyone else have flare ups of ms, say every month or so. When I explain this to my ms nurse she didn’t seem to understand (she is new so is finding her way around).
I seem to get symptom flare ups (this includes very bad depression) plus ‘constant ms hug’, new nerve pain in my feet, general pain all over, spasms in hand are worse and find it harder than normal to remember words, it’s so frustrating as I feel like a complete idiot.
As I said, silly question you probably know exactly what I mean but I find it hard to explain to friends and family. Other than saying I’m having an ms flare up which they don’t seem to believe somehow, or perhaps it’s my paranoia.
Never that often or regularly, the closest together 2 of mine have been is 3 and a half months apart. Can you see your neurologist? The thought of an MS nurse who doesn’t have much of a clue is kind of terrifying, she’s meant to be a specialist, after all. I’d have thought symptoms flaring up on a monthly basic would have galvanised medical people into finding out what on earth was going on.
I totally understand about the seeming disbelief from friends/family thing. Some of the things my mum’s said recently leads me to believe she’s sceptical about the executive dysfunction issues that I have. I think she thinks I could do things/fight the problem if I really wanted to. It’s pretty tough when it’s down to us to educate them about our problems, isn’t it, because the MS itself creates problems with explaining. It certainly does for me anyway.
Thanks for your reply jellysundae (love the name by the way). I’m actually waiting some results from an MRI I had a year ago, this was to ascertain whether I’m full on S/P. If there are still lesions then apparently I’m still having relapses then it’s worth sticking with Betaferon. Personally don’t think it’s helping as much as it was.
i struggle with ms terminology! i know what it means-i mean i struggle with the way the words are thrown about!
heres my tuppence worth! we have ms all the time-all our systems are working 24/7. i understand the definition of a relapse however just because its not labelled officially as a ‘flare up’ doesnt mean our systems aren’t struggling and are not efficient.
i totally get what u r saying! i get what i would describe officially as ‘flare ups’ at least daily. but i dont contact ms nurse (shes not interested anyway!) or gp (who is very interested) but what can he do?! i have a incurable long term illness and try to cope the best i can on a daily basis (as we all do!)
i think one of the hardest things to get ur head round is that most of the time the professionals dont know! i appreciate the honest ones that tell me so-theres no way they can understand ms (they try their best-i appreciate that) but no 2 of us are the same so trying to fit us into ‘boxes’ doesnt work!
we want to know answers which is understandable but sometimes there isnt one. thats what we need to learn to cope with.-which aint blooming easy!
so i do understand to some extent and i hope that u can find some way of coping for you.
Well jellysundae, we have lost our specialist MS Neuro, had a lovely Spanish (or I think she was Spanish) Neuro who didn’t last long, my official Neuro doesn’t really get ms so I’m loathed to contact him, I have chased up the results via ms nurses but no one’s got back to me. Or else they’ve called when the phone’s gone to answer machine which is quite often these days. So I don’t know.
Thank’s for you reply ellie, I’m like you and don’t bother to tell ms nurses, as they only suggest steroids, which going by my last encounter, felt good while I was on them but everything (ms) came back afterwards.
I do have a good GP who will prescribe drugs when ever I’ve asked for them but do not want to take any more.
Your post makes sense, someone who gets me and has worse things to deal with than me by all accounts.
By the way folks, totally screwed up with my acupuncture appointment, I’ve not been well this week and turned up at the hospital today instead of yesterday (I dialike people who don’t keep appointments)!!!