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Posted by: heatherfeather ® 12/09/2002, 11:53:34 Author Profile Mail author |
Hi, I'm new to this site, I have a sister and brother who both have this type of dystonia much worse then me, so I gues I always counted myself as the lucky one. People have always asked if I have a cold or larangitis, I just say yes. I see the way people look at me when I speak, like there trying to figure out if I am on drugs or something. I have a head tremor also...muscle spasms in my hands and feet, and mid back, a constantly sore neck and shoulders, hips and thighs. Although I have always had the "strained" voice and shaky head. I didn't always have the muscle pain and spasms, until about 10 years ago. I went to rheumatologists and physio, tried accupunture, accupressure, massage, everything helped for about 2 hours after the treatment, then the tightenening came back. I pretty much gave up, and just stopped looking for help. I am now in a new relationship, and I want to be better then this..if I can be. I am going to a local nuerologist on the 18th I know that I have at least this type of dystonia. Any advice on what to ask him about ?
--modified by heatherfeather at Mon, Dec 09, 2002, 12:08:28 |
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Posted by: Ida Neary ® 12/09/2002, 16:00:08 Author Profile Mail author |
Hi Heather The only thing I would suggest is taking a tape of your voice reading out of a book or article. Many of us have found that when we are with a doctor something kicks in and we sound pretty normal. If it would only last!!! Good luck Ida AD/SD |
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Posted by: David Barton (NZ) ® 12/09/2002, 16:30:56 Author Profile Mail author |
Hello Heather - welcome to the NSDA BB. As well as following Ida's advice I would also try to clarify the diagnosis a bit further - ie whether your SD is ADductor, or ABductor, and then ask the neurologist about treatment options - what are they, how much would they cost, etc. There's no magic bullet for SD, but some treatments do make a difference. Bear in mind too that not all neurologists are 'movement disorder specialists' and ideally you want to get an opinion and seek treatment from an expert. Good luck, and let us know how you get on. David Barton (AD/SD, Auckland, NZ) |
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Posted by: fancynancy ® 12/09/2002, 17:02:20 Author Profile Mail author |
I recently asked this same question, as I went to my first Neurologist appt last month. (Besides AB SD, I have some tremor in my fingers). Be sure and ask if there's anything else that can cause your tremors and spasms. It wasn't until I asked the neurologist "So, we can rule out Parkinson's, ALS and other causes, right?", that he says "Well, let's do some lab work, and check your thyroid (etc)". --fancynancy--
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