I thought I already posted but vanished....


I was diagnosed with fibromyalgia when I found myself in sudden disabling pain.
Since then I had some scary things happening the worst is sudden paralysis episodes, the last one was just lastnight… after the first a friend said… WAIT THAT SOUNDS LIKE MS… I mentioned it to my gp who patronised me and more told me come back when the paralysis is permemnet (nice huh!)

I started having eye trouble so i saw my optition and he did my eye exam and he told me I had a neurological eye problem, he then double checked my medical history and said ‘are you sure its just fibromyalgia you have’ I mentioned I had queried MS and he said ‘yes I was thinking MS’ he also said your optical nerve looks fine but thats quite often the case with MS and he said something else looked fine but you would expect that with MS because the episodes come and go…

and that was before the latest episode…

So now I’m waiting to phone the choose and book service for the opthalmic bit at the hospital (though he did say i might be sent straight to neurology or i might have to see opthalmic and then neurology)

Anyway lastnight I was sat down and I found i couldnt move my hands, and then i felt tired and my eyes started to droop and then they closed… and i couldnt open them!
So i was sat completely concious completely aware and unable to move anything not my mouth eyes or anything!
My husband was busy and he eventually looked across and saw me ‘asleep’ he cameover to wake me and noticed i was ice cold to the touch he started trying to wake me kept saying ‘wake up’ and i managed to get a MMM sound out and he realised what had happened so he moved me and my movement came back…

HE said my hands and feet were red…

I guess i wanted to know if this sounds MS in nature?!?

My husbands so scared and worried :frowning: I feel so guilty

Hello and welcome :slight_smile:

The first and arguably most important thing to tell you is that under no circumstances should you be feeling guilty. It’s not like you asked for this!

I’m not a neuro, but my gut feel (from what you’ve told us here) is that it isn’t actually MS, but it is clearly something that needs investigated and, I think, better sooner rather than later. In fact, I’m pretty sure that if you’d called NHS Direct when you had that temporary paralysis thing, they’d have advised you to go straight to A&E, and I think that’s what you should do if it ever happens again - if they can catch what’s going on “in action”, it’ll be very much easier and quicker to diagnose. Hopefully it won’t happen again, but you still need to find out what’s going on - in which case I think you need to take your husband with you to see your GP, explain what happened and insist on a referral to neurology. You may end up in neurology via the ophthalmology department of course, but there’s no harm in having a back up plan :slight_smile:

If you go the GP route and he/she dismisses it all again, please get a new GP. Not only was what he/she said patronising and completely lacking in empathy, it showed a woeful lack of knowledge of neurology. Not exactly confidence inspiring!

As far as what’s going on, there are actually lots of conditions that can cause the sorts of symptoms you mention: I could be wrong and it turns out to be MS, but it could also be one of dozens of other things, including relatively easy to treat things like a vitamin or mineral deficiency. So, for now, I recommend keeping a completely open mind.

I know that it’s scary, but please don’t blame yourself - you did nothing wrong.

Karen x

The paralysis you’ve suffered a couple of times sounds a bit like cataplexy, where you lose control of your muscles but remain conscious. That is associated with narcolepsy, so perhaps that is something worth looking at.