I can only tell you about my tremors, but of course I am not sure if they are the same. I can tell you that stress makes them worse--FOR SURE! I have whats called cervical dystonia & vocal cord dysphonia which causes my neck to pull to my left side. I also have tremors in my hands but most affected is my left hand. The vocal cord dysphonia causes my voice to become shakey and crackle. There is a test you can get to see if your vocal cords are go into spasms---like I said, it with out a doubt is made worse by stress. I notice when I speak with the doctors also,my tremors increase. have you had a complete work-up with a neurologist? I never realized how many neurological problems mimic each other, and it takes quite a long time for the doctors to sort it out. Try to be patient (easier said then done) and just keep on the doctors until you get some answers. The best of luck with everything. hutch

Hi Hutch,
Thanks so much for the info. Re: vocal chord dysphonia test -- I'll definitely inquire at my next neuro appointment in September. Are there meds for this? In other words, is it even worthwhile to know -- is it treatable, or just manageable?

And actually, now that you mention it (re: complete work-up), my legs really freaked out when I was getting an EMG down at the NIH medical campus last summer -- so hopefully the research team will investigate my body's reaction to the testing.

Take care,

The only treatment for Vocal Dysphonia is Botox shots. I get botox for my cervical Dystonia also---It really works well-It lasts about 3 months, and I go back again. What was the results of your EMG? It sounds like you may have something going on in your cervical spine?? Have you gone to a movement doctor. They deal with anything that has to do with movement disorders. That is the doctor who has diagnosed me and figured out what was going on. I wish I could give you more info, if I find out anything else, I will let you know. I go to John Hopkins---they are great too. NIH is great too I bet. Take good care---- hutch

No, I've never seen a movement disorders specialist yet -- I'm expecting an update from my NIH neurogeneticist soon, so maybe he'll recommend this as my next step. So far, all I've been focusing on is Ataxia specialists, since I was given the "SCA, type unknown" dx back in 2005. Thanks so much for the idea, though!

Take care,

P.S. Johns Hopkins, you say?! They have a fabulous Ataxia center down there, under Dr. Joe Savitt. I'm not a patient there, but I attended one of their support group meetings last month. Anyway, I'm sure that the two groups work closely together (that is, Ataxia and Movement Disorders), since hereditary Ataxia is a type of movement disorder...

P.S.S. Where in PA do you live, if you don't mind my asking?

I am not familiar with Ataxia, what kind of disorder is this, and what are your exact symptoms from it? I started botox 4 months ago and it really is helping me. As wonderful as JH is, I don't think they are certain on what all my neurological problems are and how they are connected to each other or not connected. I am sure you know how frustrating it can be! How did you like the support group, was it helpful? Do you live near Baltimore? I live in North wales--PA, about 35 miles from philly. take good care

Hi Hutch,
Sure, here's a quick definition that is taken from the National Ataxia Foundation's publication called Generations:

How to Explain Ataxia

"I have a problem with poor balance, clumsy coordination and slurred speech. It's called Ataxia. The balance center in my brain (the cerebellum) is not working well. This can be caused by a genetic problem, a toxin that a person is exposed to, or a stroke or injury. In some cases the doctor does not know what caused it and then the physician continues to look for a cause.
My Ataxia may continue to slowly get worse, but I can partially control it with physical therapy and medications. Even though Ataxia may look like multiple sclerosis or some of the other movement disorders, the causes are different, the treatments are different and the research organizations that are working for cures are different. Ataxia is its own unique disorder...."

Fortunately for me, I am in the mild stages of our disorder (it's a family affair for me - at least 3 generations have been affected, and we're all different in some way. And that's what makes it so incredibly difficult to pinpoint for the researchers. Currently, we're very involved with genetic testing to see if the "Affecteds" all have the same faulty gene, and that is what I'm waiting to hear from the NIH. But if nothing pops up, then I don't know what my next step is...)

The support group meeting at Johns Hopkins was very good. There are sooooo many different types of Ataxia (dominant, recessive, juvenile-onset, adult-onset, hereditary, sporadic, idiopathic), and so it was eye-opening and humbling to me. I am so very lucky and grateful, considering...

We live in Allentown (my husband, 7 YO son, our golden retriever puppy named Bonzo and me). I know your neck of the woods very well -- I used to work in Collegeville!

Have you ever gone to the Univ of PA for examination/treatment? That's where I saw my first Ataxia specialist. Maybe they have a Movement
Disorders group there for you? Is yours a family affair, too?

Take care, and I'm so glad to be corresponding with you about this!

I had my cervical laminectomy at U of P. Excellent surgeon---but had some bad experiences with the hospital. This is the only reason I am going to JH now. I have such similar symptoms as you?? I was adopted as a young child, so I have no way of having genetic testing. Isn't it frustrating when you want to understand what lies ahead of you but they can not say because everyone is different. Sometimes though I think its sometimes better if I don't know any way?? The crazy thing about my situation is the number of issues going on neurolically?? The list is never ending and I can't grasp the fact that they are all seperate entities?? But thats what the doctors are telling me--it just doesn't make sense. As far as your Ataxia--can it go into remission? I was surprised you were from Allentown---we're neighbors!!! I wish you all the best, and the one good thing is with research you never know when they will figure out a cure for these things. hutch