Does anyone have a diagnosis of Dystonia? Or know about it.

[onlyjoking9329]

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.
There are also points on my body, back of the neck 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.

Hi only, I was just browsing through some other forum topics and saw yours and it is brand new. I do not have Dystonia, but my childhood friend's mom has it. I am 45 and recognized her having troubles with her voice and her right hand for probably 22 years or more. She has progressively gotten worse over this that time. She basically has to hold her right hand with her left to keep it steady enough to write with, though it is getting very difficult to read her writing at this point. Her voice box is affected to the point that she is very hard to understnad when she speaks. Her head shakes all the time. She took botox injections for treatment, but now it has stopped working and she is progressing through the disease. I don't know much about it, but I will contact her and see if she would be interested in joining this forum. Diane is her name and she is 69 years old. Good luck finding some answers.

Thanks for your reply, I have vocal spasms which can make talking difficult, I hate speaking on the phone to people I don't know and worry they will think I'm drunk. I've read that if you have Hemi dystonia it causes spasms on one side of the body it's usual for the dominant side to be affected, which is the case the your friends mum and the same for me, I'm left handed but I struggle to grip and write due to spasms and being functionally blind in my right eye due to it being permantly shut I think that's part of the light sensitivity.
Do you know if there are things that help Dianes spasms stop, I have lots of things that make them start but found nothing as yet to make them stop.
It would be good to hear from your friends mum.

Only, I will contact Diane and go from there. Interestingly, Dystonia must not be a very common disease as Diane is the only person I have even heard of having it and never knew about it before. I thought when I was younger that she had Parkinson's or something like that.

There is a link with dystonia which sometimes occurs with Parkinson's and ms but dystonia can appear without other things. There are some links about dystonia on YouTube and there is a uk dystonia society but I've only read from it but will be getting someone to ring for me.
It seems that all the movement disorder consultants are based in London and there's no way I could make such a journey. I'm hoping that your friend has info on who she saw and where, I'm east midlands area.
Thanks for your reply.

I hope that they can give you some treatment that helps you. I am being investigated for a neurological condition, neuro thinks I have something like MS or Parkinsons. My muscles go into spasm so sharply that my GP once thought I had curvature of the spine and took photo's! It is extremely painful and very difficult to plan things because I can go from being OKish to falling and being unable to walk. I think they called mine myoclonus (although I could be wrong there). Is your co-ordination OK? Mine is shot to bits, had blood dripping everywhere when I tried to use a tin opener on Friday.

I have tried various anti epileptic treatments to try to reduce the muscle spasms but found the side effects pretty bad. Diazepam didn't really do anything for me, but Baclofen was better. I was told that a lot of neuro problems tend to be trial and error with medication.

thanks for your reply, I think myoclonus is another word for spasm?
I'm on morphine diazepam co codomol and amitriptyline, yet reading on dystonia says amitriptyline can cause spasms, although I had the spasms before I started on amitriptyline, it does make me wonder!
Co ordination is shot but not sure if that's down to my vision problems as my left and right eye see things in different places so very blurry, I'm using an iPad which is fab cos I can make text as big as I like.
Have you found anything that helps?
Parkinsons and MS are mentioned alongside dystonia. I don't think it's MS as my husband had MS and this is very different, thou my husbands MS was not correctly DX until a brain scan to rule out Ms and brain tumours and was sadly found to have both. I have friends with MS and it's very different to what I'm experiencing.

my son has a type of dystonia. there are loads of different types and individual cases can be different. in some people it can improve or disappear over time, it's not like parkinsons which is degenerative. DS is improving a lot on a healthy diet, lots of sleep and Omega 3 supplements. it can be massively affected by overstimulation, stress, lack of sleep etc. hope you get some answers soon

Thankyou, I've been reading about the gluten free diet and how some people on the American Dystonia site say it helped hugely, a vit b12 as I know deficentcy can cause neuro problems.
What treatment has your son had ? Was getting a DX difficult?
Thanks for your help.

we've still not had an official diagnosis yet, but he's pretty certainly got myoclonus dystonia as he matches the symptoms perfectly. he needs a genetic test but it hasn't come through yet. it could be inherited or a mutation. Its taking ages but i'm not that fussed as he is currently not that ill. GPs know nothing about dystonia! he's on no treatment at all and i'd like to keep him that way but who knows? it's currently fairly mild but it goes in phases which is why i think it may be partly dietary. I've considered the gluten free thing but it would be such as massive change to achieve this so i've ruled it out for the time being. I'm doing Robin Pauc's Brain food diet which is pretty sensible and seems to be helping. he has friends and enjoys life so I'm trying not to worry (easier said than done...) Why can't you get to the hospital? Are you agraphobic? Sorry to be impertinent but i think phobias can be linked to dystonia/movement disorders. Good luck with it all

There iS sometimes a genetic link, I forget what it's called now, but you have to inherit the gene from both parents, I don't know my birth families medical history, and as for my husbands family none that i know of but weve not spoken since DH died,is there anything in your extend family? There seems to be a link with IBS and gluten to, lots of American sites use special diets and have lots of info, but of course the drugs and treatment plan are probably not well known or used here.
Botox gets used quite a bit and also deep brain stimulation has shown good results.
An MRI would help you to at least find what it isn't even if you don't find what it is.
My DH went into hospital in 1990 with what he was told was a brain virus, he then had two cataract ops, fast forward to 2006, steve was sent by GP to hospital, GP gave me any relevant paper from his file, it actually said that he had White spots/ legions on his brain which they said were indicative of MS but steve never even knew that, and he was fine again till 2006 so he was Symptom free for 16 years
There seem to be a lot of drugs to try and control it all, but isn't getting better at all, my left side doesn't work, touching my neck hip lip nose and Left hand side set off a seriously long spasming session, the reason I can't go to hospital or anywhere really is that the spasms are worse with bright lights loud noises and movement and if any one touches my left side I end up falling out of the wheelchair.
I'm sure I read about link to vit b12 with neuro stuff, and in the inherited dystonia I've heard there's a problem with copper.
I'll seek out the book that you mention, thanks.