Patients Focal dystonia
Topic of the discussion
Posted on 2/15/19 11:33 PM
I am curious as to the first signs or symptoms anyone with cervical dystonia remembers having.
Beginning of the discussion - 2/19/19Share your first signs and symptoms of cervical dystonia https://www.carenity.us/forum/focale-dystonia/living-with-focal-dystonia/share-your-first-signs-and-symptoms-of-cervical-dystonia-769
Posted on 2/19/19 2:32 AM
@Hidden username for me it was twitching in the hands... This was the first weird sign. MY fingers would twitch. Then spasms like twitching in the anterior muscles of the neck began. Then my neck would sometimes jolt downward from the spasms. I suffered from "anterocollis".
However, I got much relief from Botox injections and I actually have been in remission for almost a year now. Knock on wood.
What are you experiencing?
Posted on 2/19/19 2:47 AM
Posted on 2/26/19 3:22 PM
I hope you get some relief. I am here because I have exactly the same issues you have with your neck, shoulders and affecting my entire back and front neck. I’m constantly tired battling this day in and day out. I enrolled in schoo for late May 2019 I don’t know how I’d do this going to cosmetology school. It’s debilitating. I can’t seem to do anything.
Posted on 3/1/19 7:24 AM
i started losing balance at work, couldnt rember stuff , ended up with pacemaker heart disease, after recuperating went back to work less than one week back out work balance ,memory issues ,temors hands, then neck, got diagnosed with dystonia, end of 2018 diagnosed with two diffent kinds miagraines, already had asthma from get go, now diabetes on insuline, im up to 9 specialty doctors, so many meds very overwhelming. im on pill for that,but therapy twice a week, with physical thearpist, dry needlings given the most relief so far.for that condition.
Posted on 3/1/19 7:28 AM
im, starting to have problems with my lower jaw @ even my teeth hurting at different times, anybody else having that issue.
Posted on 3/1/19 7:31 AM
ok,guys @ gals my night pills kicking in, going to bed now talk to yall tomorrow.
Posted on 3/2/19 1:02 AM
My neck started tremoring at night. Thought I had MS or Parkinson’s. But was diagnosed with Cervical Dystonia 2 years ago. Been getting Botox. Helps me sleep. But it’s horrible during the day. Can’t keep my head straight. Is exhausting. I hate it.
Posted on 3/7/19 1:45 AM
I noticed my head shaking very mildly when I put on my mascara, it grew a bit and then a family member noticed the shake and pushed me to my primary who said is was essential tremor. I was worried about parkinson's so went to a neuro who diagnosed CD. The gave me botox injections that I didn't continue because, even after insurance my share was high. That was two years ago and at that time my symptoms weren't bad. Now, my symptoms are terrible so I went back to the neuro. They seemed to increase dramatically in a matter of weeks.. I've had a mega increase in botox but not much relief.
I'll add a question. Is this my life now? Pain? By the time evening rolls around, I can barely hold my head up. PT starts in a couple of weeks. Any other suggestions?
Posted on 3/7/19 6:20 PM
I honestly do t know how I’d be managing cosmetology school in May if this continues. My neck keeps sticking out. And my neck is already in so much lainsometimes it’s hard to breath because my posture gets so bad. What causes this? I think it’s when my anti depressants were switched dramatically to higher strengths and changed to other kinds. I think something triggered me to be this way and I think it’s the sudden change in medications. I’ll be going to the States in April. And I’ll be trying to get Botox injections once I can. I hope that helps because not even massage lasts a long time. Maybe I need to go back to my chiropractor.