Anybody with Dystonia?

neckproblem

Hi,


I used to be a fit and healthy male and worked 20+ years fulltime, but last year I started to have a problem with my neck and my workplace sent me home and my doctor put me on lots of different medication (dicloflex, robaxin,diazepam! etc..), but nothing helped. The doctors then referred me to a good Physio Therapist which helped a little, but when I started seeing a neurologist, I was told that I can't have Physio if they think its a neurological condition. Physio stopped and now I am just looked after by a Doctor and Professor at a Hospital in the city centre. The botox they tried in my neck didn't work.


I'm seeing a Chiropractor now who said my posture needs improving (and it has gradually in the last month), but even though my back doesn't hurt as much as it used to, my neck spasms still persist and I when I initially walk for first 30 mins I have a pain in lower back (like a knot?). It is very painful to go walking up the street on some days, but sometimes I have better days when I am a little bit more mobile.


The main problem I have at the moment is that I'm used to earning £1500 a month and now earn £280 through ESA. I have been signed off work for almost a year now. I did apply for DLA? but I have heard nothing back from them. I just wondered if anyone has been in this situation or living with this Dystonia condition.


Thanks

Foxy16

Hi, yes I have had dystonia since 1998. When it causes the neck to spasm, it is called Cervical Dystonia, which is what I have.

It is normally a neuro that prescribes pills etc. not a Dr. as they do not have the experience. A neuro will try botox injections which help a great many with this condition, sadly it does not help me, and pills have not helped either. I would advise against seeing a chiropractor as it is known this can cause the neck spasms to worsen. You really need to speak to a neuro.

I get ESA and low rate care & mobility DLA, but have other health problems as well. My advice would be to contact a local welfare rights advisor is you have one, or citizens advice.

I really feel for you, as this condition is really unpleasant.

neckproblem

Hi, thanks for the reply, I have cervical dystonia too which affects my neck as the muscle tightens and won't release so I have to pull my head down to release it (head pulls back). I find on windy days my mobility is bit better when walking, I don't know why. Im still seeing the chiropractor and he has seen my mri and xray and said once my posture and neck improved hopefully reduce the spasms. I am under the care of two neurologists but they just want to put botox in me and thats pretty much it. Im planning on seeing a neurologist in London who may be able to help.

I will contact CAB and speak with a local welfare officer see what they can help with.

Indie_Kid

This was a diagnosis I was given in 2012. Well, neurology said I had, neurosurgeon says no and no-one can decide what's wrong...

neckproblem

Indie_Kid wrote: »

This was a diagnosis I was given in 2012. Well, neurology said I had, neurosurgeon says no and no-one can decide what's wrong...

So what does your neurosurgeon say it is then? are you going to seek any further opinions?


I must admit I'm not entirely accepting it is Dystonia yet, as so far the Neurologist is telling me it is hereditary condition but my brothers or parents don't have any movement disorders. Last year work was very busy (physically) and I had a bang on the head and lifted some heavy items, then gradually neck spasms started getting worse until I was signed off work.


I've phoned up the PIP claimline and see what they say, as every little bit helps until I'm back in work.

Indie_Kid

They don't know. Or rather, found another problem and ignored the neck issues..

Foxy16

Neckproblem, by your description it certainly appears to be cervical dystonia, there is a lot of info about this on the internet, plus a few forums. Unfortunately, some neuros, are not well informed on this conditions either, it can be hereditary, caused by an accident, stress, numerous causes. There is a dystonia foundation based in London. I belong to a dystonia forum, and on there loads, myself included have tried, physio, acupuncture and visited a chiropractor, all to no avail. I hope I am wrong, but I do not think your chiro is correct when he says, once your posture improves, so will the spasms. Sorry to sound harsh, but I do not want you to be under any false illusions.

As one neuro said to me, as they do not know what causes this condition, there is no cure.

The majority of neuros' do use botox, and as I said previously, this can help a lot of people. My very 1st botox injection in 1999, stopped all spasms for 9 months, I thought I was cured, little did I know.

If you need any further info, please feel free to ask.

neckproblem

Hi,


yes I agree with what you say, but I guess I'm still in the early stages (11 months) so once chiropractor gives up, and after I've seen the neurologist in London, I guess I will accept it and adapt to life. Do you work from home? I have read that some Parkinson's disease medicines work quite well with cervical dystonia, but that's most likely something to try in the future.


I find that on hot humid days or if the wind is blowing in my face, I get less spasms, I guess it's bit like touching your face, the sensation helps? ....strange condition..


thanks

Foxy16

Hi, Is it King's hospital you are seeing a neuro at? If so, you are seeing some of the best neuros'. I am pleased you are open minded about the chiro, as it can be so disheartening if something does not work.

The weather can and does affect dystonia, a lot say the cold weather makes their condition a lot worse. I walked around for years with one finger touching the side of my nose, this helped keep my head straight, the opposite happens now, if I touch my face, my head veers to the left, yes certainly a strange and unpredictable condition.

No I do not work at all, lost my job through this, years ago. To me parkinson's and dystonia have many similarities, so the same medicines are tried with both. The last resort is DBS (deep brain stimulation), I was referred for this a few years ago, saw a DBS surgeon for an assessment and DBS neuro, both were against having this done, and said if they were ever offered this op they would flatly refuse, yikes! Needless to say, I will not have this done.

neckproblem

No its called The National UCLH and his name is Dr Mark Edwards. I will have a look at Kings Hospital aswell though. I find the spasm starts to tighten my voice box and front neck muscles then the back of the neck stiffens until I can 'release' the spasm and tight muscles in the neck.


Some days are better than others but its quite debilitating to be honest. I have looked at DBS and at first it seemed quite good but then I read a thread on one of the dystonia forums where some were getting bad and permanent side effects which sounded worse than dystonia itself, so I was put off by that a few weeks ago.


When my employer finally lets me go due to inability to do my job, I guess I can't claim ESA anymore?

Indie_Kid

You should be able to claim ESA once your employer lets you go.