Does anyone know about or have Dystonia, do you recognise this?

[onlyjoking9329]

I posted this in general health but thought here might be a better place.

I've been ill and in bed since December, the neuro has done a scan and ruled out MS and brain tumours which was a Huge relief. They're still not sure what's causing the disabling painful frequent spasms on my left hand side.or that light, touch, movement and sound trigger the spasms. My right eye is bad as is locked shut due to spasms or to shut out the light
There are also points on my body, back of the neck and all of left side that cause spasms if touched, this also happens if I put any weight on my left toes, physio says that my tendons have shortened considerably meaning I can't straighten left leg and so can't get my left heel to the floor
Having doing some research we think it is Dystonia.
We've read about Dystonia on netdoctor and I tick all the boxes for it, but the neuro didn't consider dystonia and are trying to say it's a physiological neurological thing. I don't agree with him and neither do other people who know me well. It's looking likely that we will have to go private as I'm not able to get to the hospital and my current consultant doesn't do home vists.
Does anyone recognise my symptoms?
TIA.

Bumping, as I'm sure there must be someone out there.

blimey, OJ, have a ((hug)). Bumping for you. someone must know.

Thanks for bumping this for me, I've started a new drug today, it's for epilepsy and we hope it will stop the spasms.

I have heard of this, & possibly may even have a much milder version myself, I can feel it but not obviously visible, sholuder frequently locks up, as do my hands & parts of my face lock, but not parts that are visible IYSWIM & only for shortish bursts - though so far its being lumped in with Fibromyalgia & M.E. & put down to muscle spasms as a result of those - its nothing like as bad as you describe though :(

I do have a friend in the US, met her via a health forum for FM, she also has M.E. & after complaining of similar problems with facial & hand muscles, she's been diagnosed with Dystonia - I think as with a lot of things the US are streets ahead of us as regards understanding & diagnosing these things - so maybe finding an American forum would be a good place for more upto date info

Do you know Medhelp?? it might be worth posting or at least having a nosey around there

this forum here covers dystonia

& if your Dr isn't been helpful or listening properly, then insist on a 2nd opinion - you are entitled to that by law.

good luck

Hello,

Sorry to hear about all the trouble you've had, especially with diagnosis. I have dystonia, have generalised with relatively minor spasms in my hands, stomach, speech and legs, and used to have torticollis.

What you're describing sounds familiar, but there are other things it could be. The label of dystonia doesn't really tell you much about the underlying cause, it's more a description of the symptoms, so in my case it was diagnosed when most other options (brain tumour, MS etc) were discarded.

I was originally told it wasn't dystonia, but I asked for (and got) a referral to a movement disorder specialist, who agreed with me straight away. Unfortunately I've always had to go to them, never had a home visit. Would it not be possible for someone to take you in a wheelchair (my main mode of transport!)?

I don't know where you are, but can recommend Institute of Neurology and Neurosurgery in Queens Square if you're near London, I asked my old GP for a referral there.