Not Diagnosed - Woke Up Paralysed

Hi all

This is my first ever post and I’m just looking for somewhere to speak about this where I don’t sound crazy.

I was diagnosed with fibromyalgia nearly ago and told there was nothing they could do to help me so I was to “persevere” which I managed to do until about six months ago.

  • Weakness and next to no feeling in my left leg

  • Falling over frequently, struggling to walk even short distances and am unable to step over or move around things

  • Constantly sleeping and feeling absolutely exhausted. If I’m not at work, I’ve been in the house asleep until I really need to leave. And even then I’m a walking zombie.

  • Mind goes blank and sentences trail off , can’t think of the word I’m trying to say but can picture it. Saying wrong words but close (went through a stage of saying “box” instead of “bag” while trying to mime what I meant)

  • I woke up twice, and only twice, in the night and was falling to one side. Like when you have too many wines, the room was spinning to my left and I was banging into the walls in the hall trying to get to the toilet

  • Walking like a tin man and even my boss has pulled me aside after falling on my bum in the office because I completely missed my seat and couldn’t just hold myself up to stop it

  • Struggle to move my right arm occassionally, difficult to type on the keyboard at work etc

  • oh and a numb tongue about once a week?!

I eventually gave in and went back to the GP and found a lovely doctor who has been the first to ever support me and I’m going to hold onto her for dear life. She asked if I ever had any tests done (which I haven’t) and referred me to neurology and physiotherapy. I’m on the waiting list for both.

But today I woke up and couldn’t move. And I mean COULDN’T MOVE. The only thing I could control was my left arm. I’m willing my brain to move my legs and my right arm and to twist my back and I couldn’t. I was trying to speak and I couldn’t talk properly, my partner was struggling to understand me. I was just lying there, locked in my own body. I’ve never felt anything like it. I managed to eventually move my right arm but it would only go into a claw-type situation under my chin, with my fingers and toes taking turns to pulse and twitch. It was honestly terrifying. Lasted about 45 minutes and my partner had to drag me out of bed to the toilet as I was bursting for a wee and slowly throughout the next few hours, I was able to bend everything again.

I think I have MS. I am hoping the neurologist does a brain scan or something or can explain these symptoms in some other way.

I suppose I’m just here to say…what is this? Has this happened to you? Is this absolutely not potential MS? I feel like I’m losing my grip on life at the age of 30 and I’m starting to really struggle with it.

Absolutely any chat or input would be greatly appreciated - and I’m so sorry for typing War and Peace. X

Hi, this sounds very scary. If you are paralysed I would be making a big fuss trying to get into hospital to get tests or imaging. It could be symptomatic of many issues or conditions but it sounds serious enough the get a rapid diagnosis.
Good luck and all the best. Mick

welcome to the madhouse lol.

OK seriously if i had woken up paalysed i would be ringing 999 or sorry my partner would have you could have had a mini stroke. I dont understand why it was just left. When i finally had my blow out with this disease from 2000 in 2006 i couldnt get out of bed my legs wouldnt work and when i tried to stand they were like encased in concrete. My husband rang the GP surgery and the doctor came out and checked me over and said i needed to see a neurologist and that was my start. i saw him in a week later privately and it took until 2016 to finally after a multitude of tests be told i had PPMS.

There is such a think as as hysterical paralysis. Doesnt mean you are not ill but something has triggered it. the fact you were not panicked to go to hospital I find quite worrying and i feel even now you should have been checked over you could have had a mild stroke and it could be a precursor to another one.

being honest here, something is way off you know that, and it needs checking.

I wonder if your not in the UK. i really dont understand why there was no urgency. i would have been pooping my pants in fear.

you seriously need to be checked IMHO.

Hey haha thanks!

I am in the UK and I was absolutely panicked but I couldn’t exactly jump up to the phone - and by the time I could, it’s because I’d started being able to move again. I think there was an element of shock too.

My partner did the FAST technique and I could smile etc so she didnt think it wasn’t a stroke. Tbh I’ve had so many ridiculous things happen that I’m almost used to it which I know isn’t right either. I haven’t been able to feel my left leg probably for many years.

Called my GP this morning and explained what happened she said if it happens again and lasts more than an hour, to go to A&E next time but she’s glad I called for her to put it on the notes for the neuro and I’m to keep an eye on any and all symptoms that come on suddenly and let her know.

sorry you said your partner was there so over 45 minutes is a long time, it doesnt have to be stroke can be other things. Very scary maybe get yourself a care line so you can contact someone urgently.

you could have PPMS. it isnt the same as RRMS and can be different. what you need to do is write down only the main things that you struggle with if you write down too much they just think your over-reacting. i would concentrate on the numbness, left side and the loss of feelings this morning, the other stuff i wouldnt worry about it. one thing i do know if you are say left sided weak, you wont have fibromyalgia. xxx you know like if your left hand tends to be weak but other side is ok. falling, stiff legs (spasticity) somethig is obviously going on but it is a long process for diagnosis sadly. xx

Hi, I had the symptoms you listed above about 2 weeks ago. Still have them now but been told to await referral. I would definitely go to AE and make a fuss about paralysis. I’m glad it eventually wore off though. MS is difficult to diagnose and I’m afraid even when you see the neuro team it will take time and tests to reach a verdict. Hope you get results soon :pray:t2:

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Hi, I was diagnosed with PPMS in 2020. My wife also has Fibromyalgia and suffers very similar episodes as you have described. Luckily my wife was with me during a visit to my neurologist and we got to explain the issues she was having during my appointment. the neurologist to us to get the GP to refer he to neurology for an appointment. We done this and she got the appointment and mobility tests, then a week or so later an MRI. The MRI did not show any lesions on the brain or spinal cord so MS was dismissed. However, the neurologist diagnosed her with FND functional neurological disorder. Which is basically the same as MS without the lesions in the brain or spinal cord. But the signals from your brain are getting cross wired. Wishing you well.

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