Does anyone else on here suffer from this? i am yet to find out if it is linked to my ataxia.
A lot of us have dystonia, but we don’t all have the same type of ataxia. The National Institute of health has a nice website at www.nih.gov. In the search box put your specific type of ataxia and it will list all associated problems for your type. They are a wealth of information. Hope this helps!
Is dystonia weird movements cause by muscle spasms or twitches?
yes i have it in my whole torso and neck
Iwentdownunder said:
Is dystonia weird movements cause by muscle spasms or twitches?
Then I have them in my feet, my arms, etc… Would you say your fingers or arms get stuck? That’s what I say when I’ve tried explaining it.
Yes my fingers feel like they can’t bend… I’ve always had that didn’t think it was dystonia. My arm goes too sometimes depending I what I’m doing. I’m only 25 and struggle to put make up on ad I’ve had to cut my hair short.
Dear Letitia, Yes, I have in in some fingers and believe it's related to my ataxia, although I've never confirmed this with my neurologist...,;o)
I have Blaphrospasm / Apraxia , the Blaphrospasm is treated with Botox exrays avery 3 months .
Reading your message , I became curious because 4-5 yrs. ago Dystonia was mentioned by 2
Neuro Dr.s... I looked it up after seeing your concerns , Letitia , I have speech therapy, and several
of the things (muscle spasms draging leg etc ) . I have Ataxia also but it behaving better.
M.E.
Yep, I do. I've been told it's related to ataxia. I take Tizanidine, substituted for Baclofin because the doc thinks I can tolerate it better in the long run than Baclofin.
I have cervical dystonia. I was diagnosed recently and was today, denied botox treatments by my insurance. I be filing an appeal.
My neurologist said that this is a second movement disorder for me.
i have tried almost every drug there is, amantadine, diazepam, baclorfen, gapapentin. all of which dont seem to be working, they are in talks about whether to try botox injections.
Yes, I have dystonia in my legs, left hand and eye muscles and I have always assumed it is linked to my ataxia. I am pretty sure it is.
Yes, I have gluten ataxia and suffer from dystonia in my neck and upper back. Botox treatments have all but eliminated what had been constant pain in my neck. I am convinced that my dystonia and ataxia are related as the spasms in my back will start several hours after mistakenly ingesting gluten and often last for several days.
Best of luck to you as it can be a very painful condition.
Yes. I have cervical dystonia. I have had it for many years, in two different stages, and the ataxia itself started more recently. I have botox injections every three months for it, and I am virtually pain free, and my neck is almost straight again.
I found out recently that the two are connected. I have type 6 ataxia.
Magrat,
I'd be interested in hearing more about your ataxia and cervical dystonia connection. I've been diagnosed with ataxia since 2009 (gluten ataxia) and just last month was diagnosed. I'm starting botox injections next week.
What has been your experience with botox?
Hi Julie,
I have spinocerebellar ataxia type 6. Definite diagnosis about a month ago, symptoms started several years ago. I have had cervical dystonia for much longer, and it seems that there are a small number of people with type 6 that also have dystonia. Aren't I lucky. The dystonia was initially very painful, and it took me five years to get a diagnosis, so that was five years with extreme pain, but when I had my first botox injection, the relief was almost instantaneous. The pain didn't go completely but was manageable, and each bout of injections since, the pain has lessened. Now I rarely have pain, if I do, it's low level, and transient. My neck is still stiff (seems that's the associated arthritis), but it is now almost straight, instead of twisted, and I no longer get the spasms.
Update: Insurance has approved botox after all. yeah!
Julie in Colorado said:
I have cervical dystonia. I was diagnosed recently and was today, denied botox treatments by my insurance. I be filing an appeal.
My neurologist said that this is a second movement disorder for me.
Good on you Julie, in filing an appeal. We have a different health system over here. If you have cervical dystonia you need botox! Simple!
Yes it would be. I hope you win your appeal, Julie. Another thing that helped me while the doctors were deciding what my problem was was acupuncture. It didn't heal anything, but it made me better able to cope.
And chocolate. Dark chocolate.
Great news, Julie!
Julie in Colorado said:
Update: Insurance has approved botox after all. yeah!
Julie in Colorado said:I have cervical dystonia. I was diagnosed recently and was today, denied botox treatments by my insurance. I be filing an appeal.
My neurologist said that this is a second movement disorder for me.
This is interesting Bill. I too have gluten ataxia. I was doing pretty well symptom wise for a few years, then I did a "gluten challenge" last November/December to see what the reaction would be. I had been having what I called mini-episodes of ataxia before this challenge. The challenge was stupid and I take full responsibility for it. I had a full blown gluten ataxia episode. Then in February the head tremors became constant where before they had been occasionally. It may or may not be related to the gluten challenge. Life goes on.
The dystonia is in my jaw too on the right side. All of symptoms are worse on my right side. The neuro has offered to give me some botox in the jaw too.
Buffalo Bill said:
Yes, I have gluten ataxia and suffer from dystonia in my neck and upper back. Botox treatments have all but eliminated what had been constant pain in my neck. I am convinced that my dystonia and ataxia are related as the spasms in my back will start several hours after mistakenly ingesting gluten and often last for several days.
Best of luck to you as it can be a very painful condition.