Long time no see update...

Hi there, blasts from the past and new ones!

Hope you’re all as well as can be and as humourous as ever. Just thought I’d give a little update now I’ve got a firm diagnosis of… Neuromyotonia (Isaac’s Syndrome).

I have just been through 2 years of not knowing what was wrong with me which started with my GP telling me I most likely had MS (hence my link with this site which is fabulous and the best forum there is). Several MRI’s were clear so MS was ruled out and I was a mystery who didn’t fit any box, or so it seemed until now.

There don’t seem to be that many of us Isaac’s people in the world but we’re all buzzing, pinging, zinging, jerking, muscle cramping and twitching, have painful muscles, difficulty walking, slurred speech, fatigue etc much like MS but without physical damage to the central nervous system. I reckon there are actually quite a lot of undiagnosed people out there, some of whom are most probably on here with their mystery ‘MS like’ illness being labelled ‘functional’ like I was. It can be diagnosed with EMG and/or a positive VGKC test (which I have). I’ve got a relapsing remitting version and have just come out of a major relapse which led to me being given a blue badge :cry:

For anyone still undiagnosed and seeking an answer this information just might help get you on the right path of investigation.

Love to you all,

Deb xx

Hi Deb, Lovely to hear from you. Sorry about your diagnosis but so glad you finally know what has been causing all your problems. I don’t know anything about your condition so will have a read later. Do you have any treatments for it? Sam xx

so glad you have answers Deb, and that you can put the functional label to sleep.


Catherine xx