Just home from hospital

I was actually at work Vicki! Thankfully I work in a hospital but the drs there had never seen it before and got completely freaked out! It came on very quickly. I had woken up feeling weak but ignored it and went to work anyway. An hour later I was lying drooling on a bed with the GP frantically on the phone to my neurologist! I was transferred to the local big hospital where I was met by my neurologist and his team who sorted me out. He’s lovely!

Claire, glad you’re home and recovering now.

Thanks for posting that video. It’s really informative and I’m going to post a link to it from the Muscular Dystrophy Campaign website. Don’t know about anyone else but I hadn’t seen or read about this condition before, so have learnt a lot today.

Hi Claire,
I’m glad you’re home and feeling better. That video was really interesting. Just watching for a few minutes was upsetting enough, I can’t believe you went through that for 48 hours. I have limb girdle MD and therefore my respiratory muscles are affected. I sometimes get temporary paralysis when I’m sleeping where I’m unable to move a muscle and can’t breath at all. I often end up being sick after the paralysis passes. It usually only lasts for 30 seconds or so, although it feels like hours at the time. I’ve spoken to my consultants about it but they don’t seem to think it’s any major cause for concern. Next time I’m at the hospital I will be bringing it up again as I had never thought of the potentially fatal outcome if I was to be sick before the paralysis passes. Thank you so much for posting this video. I feel like I’ve learned a lot.

@eilean wrote:

… I’ve spoken to my consultants about it but they don’t seem to think it’s any major cause for concern.

not a major cause for concern friggin well should be, since when is not breathing not a cause for concern

Hi! Clare,
I have PM’d you! I have Periodic Paralysis too! Probably Hypokalemic or Andersen Tawl .Well that’s what they thought at the last consultation, I had to point them in the right direction, kept trying to send me to the Quacks!!! but I have alot in common with MMD! Thank goodness your neurologist put them on the right track!
I suffer partial Paralysis attacks daily and when asleep but several times a year I will have a total Paralysis attack In the day like yours, it can last hours to days! My hospital is totally usless and think I am putting it on! For goodness sakes! They treat me like S***! sorry nothing good to say about them at all! So glad they treat you properly!
Is your breathing affected? As increasingly mine is, now that scares me! I’m waiting to get a bi pap machine or something similar. Pls get in touch it would be great to chat!
Michelle