Hello
 

Hi there. I live in the UK. 26 years ago
I was diagnosed with Benign Familial Cramp syndrome and associated muscle hypertrophy. I have been on Quinine Sulphate 300mg at nigh ever since. Exercise of any sort makes the muscles twitch and I rarely get through a night without cramp. If I have any alcohol I get cramp that starts in my feet and progresses in opposing muscles at the same time, as you can imagine I rarely drink alcohol.

Just recently I have noticed involuntary twitching in various muscles, eg forearm if I've been using the computer mouse. Most nights I get crazy twitching (like there is something alive and wriggling inside my calf muscles). The cramps were horrendous and debilitating when I was pregnant both times but then improved a lot when I had to have a total hysterectomy in 2000 and I have been on oestrogen only HRT gel since.

I wonder if it could be something to do with the fact that I would likely be going through the menopause now anyway (I still get hot flushes if I miss the HRT gel)

The Neurologist I used to see who arranged the muscle biopsy 26 years ago has now retired. When I have googled I now find stuff about BFS how should I go about finding a neurologist with a special interest in cramps/fasiculation or would any Neurologist be able to help. Any comments or help would be greatly appreciated, thanks

Great to meet you!!