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Posted by: knoxie goad ® 11/26/2008, 14:14:34 |
Does anyone out there have spasmodic dysphonia plus torticollis? I have had 2 rounds of botox for both and it hasn't helped. The SD has been coming on for about 15 years and is almost full blown. I was diagnosed with torticollis approx. 6 years ago and it has gotten pretty bad. My head shakes alot and has spasms which is really uncomfortable. It is really bad in church or when I'm trying to keep my head still. I'm due to take more botox in Jan.for both conditions.
When I had the first I had trouble swallowing so the doctor gave me more the next time because I didn't tell her I had the problem. I really had it after the second round. She said she wouldn't give me as much in Dec. I'm undecided what to do about taking more. Let me hear from someone-my torticollis is really more bothersome than the SD. |
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Posted by: Irish ® 11/27/2008, 01:03:14 |
Hi there,
There is a wonderful lady in California who deals with dystonia patients. She has neck dystonia but not SD, but there are people in her support group who have both. Since the torticollis is your primary concern, I think you would find it helpful to contact her. She's great. Here is Martha's email addres: tmmurphy@juno.com Irish |
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Posted by: knoxie goad ® 11/27/2008, 21:03:32 |
Thanks for the reply. I am going to email this person and I'll let you know if she has any answers.
Thanks again. |
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Posted by: hoarse whisperer ® 11/29/2008, 10:15:37 |
A good source for information about Spasmodic Torticollis (also known as Cervical Dystonia) is the Dystonia Bulletin Board. If you scroll to the bottom of the main page on our Spasmodic Dysphonia forum, you will find links to other discussion boards - the Dystonia Bulletin Board, the Blepharospasm Bulletin Board, and the Musicians with Dystonia Bulletin Board. According to the presentation by Dr. Christy Ludlow from the National Institutes of Health during this year's Spasmodic Dysphonia Annual Symposium, up to twenty percent of people with one form of dystonia will go on to develop another type of dystonia. Lori
Ps) It's great to have this forum back! Thanks to everyone who works so hard to provide this valuable form of communication and source of information.
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Posted by: chokedup ® 12/02/2008, 13:15:29 |
I was just diagnosed with ST in Oct. I have for several years experienced daily pain and soreness in the muscles on the left side of the back of my neck. On the worst days I cannot even turn my head to the side. For quite some time I thought I had persistent tension headaches, but realized that it would be very rare to have them daily. I also tend to hold my head a bit to one side and in pictures it looks like I'm posing. I mentioned this to my ENT and neurologist who suspected it could be ST. I have never had any movement associated with it.
I finally made an appt. in Oct. and after a full evaluation the neurologist diagnosed me with it. He wants to do Botox, but I have declined that for now. I currently receive Botox for SD because I have to in order to function. The ST causes me daily discomfort, but it is manageable. Interestingly, when a rare day comes along that don't have soreness in my neck, my voice is better. |
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Posted by: Mackie ® 12/04/2008, 17:27:25 |
I understand what you are saying. Same thing with me. I have segmental dystonia, includes Blep., S.D,ST. Meige. I gave up on botox and meds. They were not working for me. I have been having acupuncture & neurofeedback. These have worked great for me. Wishing you pain free days ahead. |
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Posted by: BJW ® 12/06/2008, 11:36:05 |
I have had SD for about 23 years.It took (6 or 7 years) and finding the right Speech Pathologist to finally get accurately diagnosed. I immediately began having the botox. Most of the time they work great and I have relief for 3-6 months. Just this past Spring I was diagnosed with movement disorder (head tremor and body tremor). It "appeared" (and I say appeared, because one day I was fine and the next, my body was shaking all over)overnight.But what brought it out, I believe was an extremely hostile work environment, which I ended up leaving, but the tremors stayed. My neurologist treats me with 50 mg of primidone at night, and it has helped. Although I am starting to get head tremor again, usually every morning.... You could ask your Doctor about this med. Maybe it could work for you as well..... Good Luck! |
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Posted by: knoxie goad ® 01/10/2009, 21:38:05 |
I was suppose to go back to the hospital here in columbia for my doctor to give me more botox january 20the but the doctors office called me last week and said our hospital was not going to be able to give them any more. She said it was pertaining to insurance. Maybe some folks are getting it who don't have insurance and then want pay-I don't know but I am terrible dissappointed. They told me they were going to see if they would give another drug that is similar to botox but I forgot what she said. Does anyone know? |
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