I have my diagnosis

New diagnosis and before diagnosis
1

I have cramp fasciculation syndrome and am being started on carbamazepine soon and couldn’t be happier to get a diagnosis. Just wanted to say thanks for all the support and let others know there can be light at the end of limbo thanks to my brilliant neuro ;0) xxxx

2

I’d never heard of it so had a google. So glad you have a neuro who can think outside the box - it’s pretty rare! And also treatable!! YAY!

I hope the carbamazepine makes a MASSIVE difference

Karen x

3

Congratulations (is the right word?!) on a diagnosis, a helpful neuro and a way forward

4

Hi Luelle

I hadnt heard of it either so I too googled it. Really pleased you got a diagnosis, and I hope that the meds help you alot.

I take carbamazepine for muscle cramps and tightness and hope it works as well for you as it does for me. I havent had any side effects either, so hopefully you wont.

Good luck Luelle

Paula xx

5

Thanks guys totally with you on having to google it although it came up in my symptom search before I had my diagnosis. Congratulations is definitely the right word as now I know what it is it’s like a weight has been lifted as CFS ( it’s easier than typing all of it !!) mimics things like ALS which I was terrified of as I’ve progressed to problems with swallowing and breathing, only very mild but still scary as hell !! Karen you have been outstanding in supporting everyone on here me included its not often something comes along you have to google lol. Big hugs to everyone xxx

6

Hi Luelle Glad that you’ve got a dx and some treatment that will hopefully work for you. Teresa xx

7

Hi, So pleased you have a diagnosis. I hope the meds make your symptoms better. Hugs Sam x

8

Well done for getting a dx. What a relief eh?

Hope the med’s now make everything better.

Pat x

9

Wow that is rare! I’m so glad it’s CSF - it’s treatable which is good.

Hope you start to feel better now with the meds.

Reemz

X

10

Thanks everyone Still in a high from being lifted from limbo land, forgot to mention he also said I have migraines, restless leg syndrome and my GP diagnosed me with reflux which I already take Omeprazole for which is helping. I’ll check back on this thread in a couple of weeks and let you know how I get on you never know this could be the diagnosis someone else is waiting for too. I don’t know just how rare it is I can’t find any figures but then I always get told I have a strange brain and I’m one if a kind, first from my family, then tutors and fellow student nurses and now my neuro hahaha. The best bit is my 8 year old should get his mum back ( he helps me out at home more than he should) and I can run about with him again AND I get to carry on in my last year of nursing yayyyyyyy ;0) xx Love and much hugs to everyone xxxx

11

So pleased for you! You must have a big drink tonight!

12

So pleased for you! You must have a big drink tonight!