Musicians with Dystonia Bulletin Board

My diagnosis was with a NHS neurologist who was convinced it was dystonia after spending just 5 minutes with me.

I saw him after an 18 month journey trying to find out what was wrong with my hand. A neuro was the last thing the GP recommended (actually I had to make a bit of a fuss to even get a neuro appt). I'd already had an MRI on my shoulder and arm, nerve conduction studies, lots and lots of physio... All to no avail.

My index finger started to lose its dexterity which is when I noticed a problem - main problems were writing with a pen, typing, playing guitar... I had been playing a LOT of badminton and doing a HUGE amount of very fast typing in a very pressurised work situation, and playing a LOT of gigs with my band. So my hand/arm had been under enormous pressure for 4 months or more. I figured it needed some rest, but never really gave it this rest...

This progressed to problems with reaching out and picking up a glass and holding a glass without crushing it with my index finger. Then problems with things like washing my hair, with my finger flicking inwards if I tried to do anything that required dexterity. This progressed recently to a general curling in of the finger even when at rest.

So in a way, it is restricted to a certain set of actions, i.e. anything that requires my index finger to perform a certain action. Because that finger is so "involved" in so many actions, it affects anything I want to do with my hand. I seem to be unusual though in that i am constantly "aware" of the dystonia because even when at rest I feel a certain amount of discomfort in my arm, and when walking or running and having the hand dangle at my side, my finger is uncomfortable and wanting to curl inwards. This got significantly worse with the usage of the Citalopram.

I seem to be different to most people I have talked to on here in that my whole right side is affected. I get pain in my forearm, and in my right shoulder and particularly in the trapezius muscle of my right shoulder. This (with my anxious mind) leads me to fear a progression to cervical dystonia, but I don't currently have the tremor and pulling associated with this. I just think the right side of my body is trying to compensate for the dystonic movement. Some physical therapy may help me out here if I can find someone who understands the condition.

I'm finding it hard to identify exactly the muscles at play in the dystonia, and I feel like I need some help in doing this. I think I've been "fighting it" since it started, and need to adopt the approach you have outlined here.

I have even considered going to see Dr Fabra, just to get me kick-started. Any detail you could offer on what he charges for a consultation and how one goes about getting one, would also be really invaluable at this stage.

Thanks again,