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Movement Disorders Including essential tremor, dystonia and Restless Leg Syndrome (RLS). |
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07-18-2009, 07:27 PM | #1 | ||
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Hello,
I have an unknown neurodegenerative disorder which is being called "Spinocerebellar Ataxia, type unknown" for now (another story). Anyway, I have lots and lots of medical questions, but here is the latest and I'm hoping that someone(s) here has some words of wisdom/ideas to share. I experience non-stop tremor-like activity in my thighs -- only when I am being examined by a physician or when I am talking about my family's disorder. It's very visible and my episodes subside within 15 minutes or so afterwards. And so common sensically, physical Ataxia work is obviously a major stressor for me to avoid if at all possible, right? (Hmmm, I'm totally fine when I write about Ataxia, I just can't get examined or talk about it without having my thighs go into paroxysms...Oh, and my voice gets real shaky, too. What's happening here? The tremor-like activity occurs while I'm at rest (physically, anyway). Is it Parkisonism, perhaps? Thanks so much for any thoughts. |
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07-19-2009, 11:59 AM | #2 | ||
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Junior Member
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It's cerebellum tremor, part of OSCA disorder, i guess. I have intension tremor (then i work by my muscle in any part of body) last three years, and most visible in my fingers then i bring together it's for example. I think - it's thats disorder, what your, but still no diagnosed...
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07-19-2009, 07:11 PM | #3 | ||
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What does OSCA stand for -- is it Something, Something, Cerebellar Ataxia? Can my problem (tremor) be the same as yours? Mine happens only once in awhile (kinda' like "stage fright"). And sorry, I don't quite understand the rest of your reply... Take care, |
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07-20-2009, 12:56 AM | #4 | ||
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Junior Member
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Oops, sorry, of course OPCA shoeld be right - it's more common name of it's disorder, rather than cerebellar ataxia. However your type of tremor not like intentional tremor, thats link to the OPCA, but tremor can difirrent from various people.
Unknown type thats more bad than with known genetic mutation, becouse for it's cause require serach that gene is broken before the cure will be done. But take care, genetic test near future of the next two years, and unknown will clear. Sorry for my english, can explain on russian, want you? |
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"Thanks for this!" says: | color (07-20-2009) |
07-25-2009, 11:02 AM | #5 | ||
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07-25-2009, 02:01 PM | #6 | ||
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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, |
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07-25-2009, 04:58 PM | #7 | ||
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07-25-2009, 07:52 PM | #8 | ||
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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? |
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07-25-2009, 11:50 PM | #9 | ||
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