Anybody with Dystonia?

Foxy16

Parva, I really feel for you and don't know how you cope, I regularly walk and bump into things and I have 2 legs. I am the same when I first wake up, but it doesn't last long. My most offending muscle is in the right side of my neck, it is massive, feel at times I would like to cut it out.

It is a debilitating condition, frustrating, wearing and tiring with the constant movement. I cannot lay on my back at all, only on my left side which gets to me at times, and cannot look to the right for more than a few seconds.

Botox does not work well for me now either, they tried me on myobloc a couple of years ago, now that worked, but made me so ill I will never try it again.

Let us know how you get on with the neurosurgeon.

Parva

Foxy16 wrote: »

Parva, I really feel for you and don't know how you cope, I regularly walk and bump into things and I have 2 legs. I am the same when I first wake up, but it doesn't last long. My most offending muscle is in the right side of my neck, it is massive, feel at times I would like to cut it out.

It is a debilitating condition, frustrating, wearing and tiring with the constant movement. I cannot lay on my back at all, only on my left side which gets to me at times, and cannot look to the right for more than a few seconds.

Botox does not work well for me now either, they tried me on myobloc a couple of years ago, now that worked, but made me so ill I will never try it again.

Let us know how you get on with the neurosurgeon.

Thanks Foxy, your comments are absolutely spot on. I actually have a huge muscle on the left side of my neck as this is the one that is constantly pulling and I struggle to look right for more than a couple of seconds. I too feel for anyone that suffers from this debilitating condition, it is indeed pretty painful and the only relief from it is sleep.

neckproblem

These are the symptoms I have, neck spasms that mean my neck locks up especially when walking though sometimes holding my head or neck or pinching myself can reduce symptoms. If neck locks up ant walk its too painful I have to push my head down and break the stiff muscle then im fine until it happens again (usually within walking again) it is very strange condition. Also I have nerve pain in my neck and it shoots down my left arm it feels like a dead arm especially if my neck tilts backwards. I think the doctor in London will ask for another MRI? My left arm is quite painful at times but feels like a trapped nerve. I also suffer memory loss since this came on. I seem to forget things ive just done. I also find um much more clumsy as my partner says I bump into her accidentally on occasions and ive chipped alot of our crockery when putting it away in cupboard and dropped glasses on occasions. Which is unlike me. I also shake most nights when sleeping but im sound asleep, my partner tells me about it the next day.

Ive received my PIP paperwork today I guess I just fill it out then send it off hoping they understand cervical dystonia?

Parva

neckproblem wrote: »

These are the symptoms I have, neck spasms that mean my neck locks up especially when walking though sometimes holding my head or neck or pinching myself can reduce symptoms. If neck locks up ant walk its too painful I have to push my head down and break the stiff muscle then im fine until it happens again (usually within walking again) it is very strange condition. Also I have nerve pain in my neck and it shoots down my left arm it feels like a dead arm especially if my neck tilts backwards. I think the doctor in London will ask for another MRI? My left arm is quite painful at times but feels like a trapped nerve. I also suffer memory loss since this came on. I seem to forget things ive just done. I also find um much more clumsy as my partner says I bump into her accidentally on occasions and ive chipped alot of our crockery when putting it away in cupboard and dropped glasses on occasions. Which is unlike me. I also shake most nights when sleeping but im sound asleep, my partner tells me about it the next day.

Ive received my PIP paperwork today I guess I just fill it out then send it off hoping they understand cervical dystonia?

Yeah, send it off and also add cervical dystonia to the list but I wouldn't pin much hope on the other symptoms you describe. Bumping into your partner accidentally or chipping the crockery will get you nowhere. I struggle to look forward but I'm not stupid enough to bump into people or start dropping or chipping crockery. I get pain in my left shoulder sometimes but to suggest it goes down your whole arm....

I suffer pretty badly and this is after 12 months of treatment, even the hand to face solution has little effect on me now. You may be better or worse than this but I wouldn't suggest making stuff up, dropping or chipping crockery is not really something that anyone with this condition would suffer.

neckproblem

Thanks for the advice but the nerve pain does start from top of arm and shoots down like toothache but in the arm. My hand feels like pins and needles on occasions. This is why I want second opinion because I had severe bump on head and it might not be dystonia I dont know really. All I know is that doing physical activity my neck goes into spasm until muscle released.

JohnGr

I used to get cramps in my legs a lot and my doctor referred me to a neurologist, who confirmed it was dystonic spasms and has put me on Carbomazepine. I also claim DLA (sent off my PIP form two weeks ago) and ESA (even tho I'm still employed, but haven't worked for 4 years due to cancer). You can still get ESA if you're still employed, but show evidence that you're not working. Hope that helps!

Foxy16

John, really interested to read about your cramp, as for the past 2 yrs I have sufferred with it regularly in legs feet and hands (most days in fact), wracking my brain what is causing this, my pain threshold is good, but at times it can bring me near to tears. I will mention this to my neuro next time I see him, but whether he will agree that it is due to dystonia, I doubt it, seeing as though my dystonia started in 1999.

neckproblem

I have a list of questions for the neurologist in September. I am currently still employed by my company but get ESA as SSP after 6 months has been exhausted. Now if my company let me go due to my illness should they pay me annual leave entitlement from April until say October? Thanks for the advice

Savvy_Sue

If your leave year starts in April and you leave in October then you should get roughly half a year's holiday, less any you've already taken, yes.

neckproblem

Thanks for the reply also I have in the next month a formal meeting with my company for dismissal and disciplinary proecedure (they said dont worry about the disciplinary word its just them following procedures) so is this the normal way to be let go if diagnosed with dystonia by my doctor so have lost mobility due to ill health. When I am not employed anymore do I have to notify anyone like dwp? Thanks

Should they also have paid me bank holidays too?