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).

There don’t seem to be many of us 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. It can be diagnosed with EMG and, for me, a positive VGKC test. 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 : (

I’ve no idea what the future holds but I think it’s preferable to MS by quite some way. I’ll post this on the New members forum too in case this helps anyone undiagnosed get on the right path of investigation.

Love to you all,

Deb xx

Lovely to hear from you again. Sorry to hear about the diagnosis but at least you know what you’re dealing with now.

I can’t remember if you were managing to get into school - but enjoy the holidays!

Sarah x

Hi Deb

I’m sorry for your diagnosis but also pleased that you finally have an answer. I’d heard of neuromyotonia but didn’t know it could cause all those symptoms and symptoms similar to MS. Hopefully now you have a diagnosis you can get the help you need to get through this.

It’s been a long journey - I think I remember us both appearing at a similar time.

Enjoy your summer holidays.



Thank you! Yes I think we did appear at a similar time. How are you both doing? I was off work totally from Jan until I began to improve at the end of April, then I started to do a couple of revision sessions in May and gradually did more throughout June, teaching Year 10 only, then Year 10 and 9 until I got back up to full time just in time for enrichment week and the summer holidays! Hopefully I will get through next year ok but it’s so scary having your job and life threatened like this isn’t it!