Posted by: Linda Spain ®
05/12/2004, 22:51:44
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Hi, Keith. I've got no evidence to back up this statement, but what I've heard is the the older a person is when he/she gets a first focal dystonia, the less likely he/she is to get additional focal dystonias. I've posted this before and others have commented that they have heard the same thing, but I've never seen anything in the literature in this regard.I hope we see many responses to your inquiry. This is quite an interesting topic. Best wishes,
Linda
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Posted by: Jana ®
05/13/2004, 13:42:17
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In my case, it was the other way around. I had facial symptoms, developed laryngitis from a cold, received dx of Meige syndrome (focal dystonias involving face, neck, and shoulders). When the laryngitis didn't clear up, we realised I also had SD, both AB and AD.Jana
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Posted by: Bob in IL ®
05/14/2004, 10:43:09
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Hi Keith. I developed ADSD gradually over several months in spring and summer of 2000. I had to stop dictating my daily reports by July, due to the difficulty speaking (I'm a physician). At that time the diagnosis hadn't been made, but in October I started getting some twitching in the left side of my face, next to my nose -- much like those annoying muscle twitches we all get -- but it persisted and there was no visible fasciculations. From there, I developed abnormal spasms of both sides of my face and jaw, with squinting; all consistent with Meige Syndrome. All of my symptoms have stabilized (I think/hope). No other areas of dystonia have developed. Many people who develop focal dystonia do not have progression to other areas of involvement, although I don't know the statistics. I'm 52, so does that make me younger or older, Linda? Bob Cramer ADSD/Meige Central IL
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Posted by: Linda Spain ®
05/20/2004, 20:21:18
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Hmmmm, Bob, are you older or younger?As mentioned in my post, I haven't seen anything on this topic in the literature I've read; I was passing on info that I've heard repeatedly, but casually. I guess if we bifricate into older and younger as you suggest, unless you plan to live to be over 104, you're older! ;-) Best wishes,
Linda
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Posted by: Jana ®
05/24/2004, 14:57:07
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Bob, another person with symptoms that sound just like mine. I also have meige with AD/AB SD. Are there statistics somewhere about the numbers / percents of people with the various dystonias??jana
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Posted by: Bill Vanderlinde ®
05/18/2004, 13:25:33
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My doctor says that a person with SD has about a 10% to 15% lifetime risk of developing another focal dystonia, most likely something in the head or neck such as blepharospasm, meige's syndrome, or cervical dystonia.
Bill Vanderlinde
AB/SD
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Posted by: Lynne Martinez ®
05/18/2004, 16:56:48
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Hi Keith,Very good question. Unfortunately, there have been no studies on this (wouldn't be enough study-subjects) thus there are no statistics. It's a matter of doctors and patients just getting a "sense" of what might be going on, by knowing alot of patients and their cases and estimating ("guessing"), based on what they've observed or heard from others. In my own personal case, I got severe AD-SD 14 years ago, and have symptoms of mild blepharospasms in the past three years. However, had I not been "hanging out" with alot of dystonia patients at symposiums over the past few years, and doing research on other dystonias, I might not have recognized my vision symptoms as blepharospasms. I might just think my eyes were getting bad as I got older. Recognizing symptoms quickly is a good way to handle any new focal dystonia. Knowing several bleph patients (including patients of Dr. Alan Scott in San Francisco, who was the first physician to ever inject Botox for a form of dystonia) has really helped me be aware of my own new focal dystonia. I control the bleph by avoiding bright and flashing lights, and also those things they used at the Dallas Symposium (the red pointers). Those are killers. If I wear sunglasses, and look away from flashing lights, and rest my eyes and don't drive in the dark or rain, I can control my mild case. We discuss this issue at various dystonia and SD symposiums. In Dallas, Dr. Ludlow brought up the subject of the difficulty in studying SD as a dystonia (inference: connections to other dystonias) because SD'ers see otolayngologists and patients with other dystonias usually see neurologists (hopefully Movement Disorder specialists). Thus, voice patients are often disconnected from any research regarding multiple focal dystonias, or dystonia itself. Two separate specialties, where the specialists administering treatment don't always communicate. As far as the odds, it's hard to tell, but it's a good question and always good to do homework on one's own case, and be prepared. There's no script or formula in any of this. Some people get more than one, and some don't. Hard to tell. --Lynne (AD-SD; Northern California)
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Posted by: SKjellberg ®
05/21/2004, 17:39:21
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Hi Keith,Regarding my case: I'm 53 and had a motor-cycle wreck and closed head injuries at age 14 and NO problems thereafter. Then, I was in a car wreck a few years ago (1996) and got whacked hard by an airbag. Long journey short: I was finally diagnosed with Laryngeal Dystonia by my neurologist, or as it is more commonly called: AB/AD (mixed) S.D. After years of vocal therapy, alternative treatments, and over two years of Botox injections in alternating cords, I gave up on hope of regaining my "normal" voice. I was at about 50% of where I felt I needed to be. So, a year ago, I made the decision to go on disability as my career was in sales/marketing and was a professional voice user. Two years ago I had an MRI that showed I had Cervical Disc Degenerative Disease, with a diagnosis of Cervical Dystonia (and chronic pain and migraine headaches). Now, I also get Botox injections in the neck and shoulders and the head. Because no one knows if the trauma caused my problems or if the last wreck just acted to kick off a genetic predispostion of problems (have ALS, Parkinsons, and RLS on maternal side)... I'm certainly not the typical S.D. patient. But S.D. was my primary concern initially for the first few years, that's for sure! A little over a year ago I started having uncontrollable cramps in my feet and legs out of the blue, and was diagnosed with Restless Leg Syndrome. In addition to the Botox injections, I now take Sinemet, Clonazapam, and Baclofen. There's been lots of trial and error in getting the correct medications and doses right. Finally, my neurologist seems to have figured out how to make me feel "normal" and I'm nearly symptom free with Botox and medications. These are very powerful systemic medications also used for MS, Parkinsons, and seizures. The wonder of it all is that these medications seem to really be helping my voice! I have had a 100% normal voice (after 2 units of Botox in alternating cords) for about three months at a time, for a year now, since starting all the medications. Because I have other dystonia problems, the weird side effect thing with medications for all of it, is that they seem to have actually alleviated my S.D. symptoms. Each day, I'm in amazement that I have a normal voice again, which just didn't seem to ever happen for me with Botox alone. I am talking as normal as I did prior to the car wreck... so go figure? Caution: In no way would a person who is strictly S.D. want to take powerful systemic medications to improve their voice (and the research just isn't there to prove it, anyway). But, that's my story. I think we are all just such unique individuals there really isn't any answer to your question. Some of us go on to develop other things, while others do not. Certainly this BB is great for sharing our uniqueness! Best wishes,
Sherry Kjellberg/AD.AB SD/Denver, CO
Modified by SKjellberg at Fri, May 21, 2004, 18:17:12
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Posted by: teeda ®
05/22/2004, 22:51:40
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Hi Sherry,I appreciated your point about the bulletin board being a great place to share uniqueness. I've really enjoyed the tone & comraderie here, as well as the recognition that what might be true for one person may not be so for another. When I first found the b.b. I was excited to have found others like me, but as it turns out, I'm still an oddball, & it's nice to have encouragement about being exactly that. For me I think SD & the walls it throws up (& for me, the unpredictability) will be a character-building thing, although I know for others it's not a loss they need at all! It feels like being different - OK, being weird - and being OK with that will give me more backbone. At age 50, I'm too old to still be putting energy into wanting to be liked, & I have to admit that this has been the case. I was interested in your history. I have Parkinson's, scleroderma, & Crohns in my family. I'm not sure what cervical dystonia is like. I have lots of movement disorder stuff, though they don't kick in that often (yet?) & sometimes my head flops forward or whips to one side or back & forth. I don't know if that's cervical dystonia or just myoclonus or something. My eyes are also getting much more light-sensitive & occasionally I can't open them, so I'm wondering about blepharospasm too. Hmm, I hope not. That seems like that could be a tough one in terms of driving, etc. I don't have any pain at all besides very quick paresthesias & I'm sorry to hear that you've had to deal with that. Hey, does your AB & AD overlap or are they 2 separate phenomena? Mine don't seem to overlap at all. I either have one or the other (or a harsh voice, or my normal voice, or no voice at all).
Thanks again for your perspective. Tonda March (AB/AD SD / mid-Missouri)
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Posted by: Jana ®
05/24/2004, 14:55:15
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Finally, someone else describing their voice that sounds like mine!! I ahve AB & AD but it sounds like you, tonda. I can start a conversation with normal voice but it quickly becomes very hoarse, like a cold laryngitis, then disappears altogether. Recently, the absent voice will then change to a very high pitched squeak as though I inhaled a balloon of helium. finally, I'm not abnormal . . . well, ok, I am but so are others .
jana
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