Posted by: metoo ®
09/05/2007, 19:05:29
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I have not been diagnosed with sd but found myself here looking for answers, and I have been having the grimace thing, how else does sd manifest itself with you? and did you see a doctor or self diagnose?
Any info you care to share would be appriciated. metoo
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Posted by: MsMuteVampire ®
09/06/2007, 18:07:57
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I, first, was diagnosed with Blepharospasm about 5 or 6 years ago. I didn't have a clue as to what was happening to me. It took seeing 4 optomologists (sp?) to get properly diagnosed. Then, I started educating myself and my family as to what this was. I was not told, but my husband was, that this rare disease could appear in other parts of the body. About a year later I started wheezing and had a hard time catching my breath. That, plus a bad EKG, landed me in the hospital. Long story short, the wheezing and shortness of breath are symptoms of Respiratory Dystonia. My heart problem is something else. Anyway, it continued with the symptoms and then my voice started getting lower and more garbled and hard to understand. We went to the specialists at Tulane and LSU Schools of Medicine and Baylor School of Medicine. We were told that I could have injections into my vocal cords like the botox injections that I was getting all around my eyes in order to make the muscles relax where I could keep my eyes open more. (This is a hit and miss thing...some months the botox works great, others not so great. Too much in one spot can cause a droopy eye, but it is all I have got.) We (hubby and me) were afraid of the vocal cord injections and put it off for 2 or 3 years, until he could not even understand anything I was saying. We started learning to sign. So I decided to go for broke and found out where I could go to get the injections that my insurance would pay for, and that was Houston. I have had, maybe a years worth of injections. Sometimes I am very breathy, then I sound like Chewbacca. But I regress. To answer your question, the facial grimacing has just recently gotten worse. It is mostly around my mouth, like drawing in my mouth over my teeth, like a toothless person would do. And, no doubt whatsoever, when stressed, it is 100 times worse. At time my head shakes some, but the grimacing is mostly around my mouth. You too?Sorry for the long email...I hope I have helped some, and I'm sorry if I was too negative... Brenda
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Posted by: Marilee ®
09/06/2007, 19:24:54
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Hello Metoo,
SD manifests itself in the vocal cords (larynx). It makes your speech halted or sound different from your normal voice. In my own case, adductor SD, the larynx spasms outward, even making me short of breath, as well as affecting my voice. A good laryngologist (ENT) can diagnose it and give Botox injections to help if you wish.The facial spasms, grimacing, etc. is another kind of dystonia, called oromandibular. A neurologist can be seen for that. We cannot self-diagnose. You can click on the NSDA website at the top of this main bulletin board page to read all about SD. Or you can check the dystonia b.b. as I said in my post to Brenda. I had to smile at your name, because even though I am a great-grandma now, I still remember my second son wanting to keep up with his older brother, so would always say, "Me, too, me, too!" Best wishes, Marilee
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Posted by: Marilee ®
09/05/2007, 19:40:42
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Hi, Brenda.
Sounds as if you are starting to experience facial dystonia, called oromandibular (mouth & jaw) dystonia. I have all the neck, throat, and facial dystonias, including adSD. I get Botox for them all. (7 yrs.)You might want to turn over to the other bulletin boards: the Dystonia and Blepharospasm ones, to learn more about that. If you are going to a ENT for your vocal cord injections, they can refer you to a movement disorder neurologist to diagnose and care for your mouth grimaces. Are you having any other facial spasms, such as eyes wanting to shut (blepharospasms)? A lot of times they go together, unfortunately. Botox injections in the jaw area can help the grimacing, but personally I have to be very careful not to get injected too close to the lips, or my mouth turns downward and I look mad or very sad. Sometimes it's better just to grimace, if you can make it look like a smile! ;) You can read more about OMD (oromandibular dystonia) on the DMRF website, accessible at the top of that b.b. My very best wishes are with you.
Marilee in Indiana
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Posted by: MsMuteVampire ®
09/05/2007, 21:29:33
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Thanks Marilee,
Yes, I do have Blepharospasm. I was diagnosed, I guess, about 5 years ago. But I was sitting today, waiting to have blood drawn, and was so blasted embarrased by my mouth grimacing. I put my hand in front of my mouth and my head down, but I don't know what else to do. I go to two Neurologists, one who gives me injections around my eyes for the Blepharospasm and also in the TMJ muscles, because that gives me so much pain without the injections. Then I go to another Neurologists who gives the injections into the vocal cords. Neither one gives the other injections. I can handle the eye problem and the voice problem, but if this facial grimacing continues, I guess I will have to become a hermit, which is very, very difficult in the family that I am married in to (I have a brother in law running for state office). So I am the "skeleton in the closet".Help, if you can, please!! Brenda
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Posted by: MsMuteVampire ®
09/05/2007, 21:31:08
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Marilee,
How do I accesss the OMD bulletin board space?Thanks,
Brenda
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Posted by: Marilee ®
09/06/2007, 16:03:33
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There is no b. board only for OMD. However, at the very bottom of this b.b. there are the words "Dystonia B.B." and also "Blepharospasm B.B." Just touch and Click!All you have to do is click on either of them, and you will find postings on both boards concerning OMD. You can click on "Find" at the top of the page, type in any word you want to read more about, and designate it for 200 or so days. If you can't find enough info that way, you can click on "Archives" and type in OMD or anything else. Very informative to read questions and answers from other patients!
You can do the same on this SD bulletin board as well, if you haven't tried it already. The DMRF (Dystonia Medical Research Foundation) website also has much info on OMD: www.dystonia-foundation.org I will look for your postings on the other boards as well.
Any other questions, ask away!
A fellow "endurer", Marilee
Related link: http://www.dystonia-foundation.org
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Posted by: MsMuteVampire ®
09/06/2007, 18:08:47
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Thanks, Marilee. I will look for it now.Brenda
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Posted by: mdubovick ®
09/06/2007, 23:35:15
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Your userid shows you've got a great sense of humor. Keep it going.Having had Spasmodic Dysphonia for nearly 10 years, I feel fairly comfortable discussing all aspects of it. What you are dealing with is an area I don't know a lot about but I do know where you can find some information. If you have Blepherospasm and symptoms of Oromandibular Dystonia, that is a very rare disorder called Meige's Syndrome. "Syndrome" is a fancy word the doctors use when they don't know the cause of some disorder. There is quite a bit on the Internet discussing Oromandibular Dystonia(also called Focal Cranial Dystonia) and also some write-ups on Meige's Syndrome. Some very credible web sites that have written about Meige's Syndrome are the Dystonia Medical Research Foundation (dmrf.org); WE MOVE (wemove.org) the NIH -National Institute of Health (NIH.gov) and the American Speech Language Association (ASHA.org) Lastly, the DMRF bulletin board URL is:
http://www.dystonia-bb.org/forums/asd/ You should post any questions you have to that site. Also the DMRF bulletin board website's ARCHIVES section has 117 articles on Meige's Syndrome. Wishing you the best....
Related link: http://www.dystonia-bb.org/forums/asd/
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Posted by: MsMuteVampire ®
09/07/2007, 08:36:13
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Hi,
Thanks for answering. I just looked up Meige's Syndrome. I'm trying to read all that I can. For a while I thought I was suffering so much from TMJ to find out that it is typical with OMD (I think that's right). While I like my two Neurologists, I just don't know if they are that knowledgable about these weird diseases...have you tried any particular medications that seem to help you most? I've only been on Clonzepam.Brenda
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Posted by: barg1944 ®
09/15/2007, 20:41:10
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yes, I have lived all my life with this. Some people have even told other to watch when I am writing because this is when I grimace alot. My dr. is considering to do the botox for my face muscles. HAND IN THERE
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Posted by: MsMuteVampire ®
09/19/2007, 08:53:18
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I'm trying to. Is there anything you can do to lessen the grimaces when you are out in public and talking to people?
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