Posted by: Quill ®
05/18/2004, 01:35:00
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Hi There,
I have a diagnosis of cerebral palsy and other disabilities, and spastic disphonia, with a possibility of multiple sclerosis. However, it cannot be definitively diagnosed because of the preexisting cerebral palsy. I am physically regressing and cannot speak. Botox injections are contraindicated and could be deadly. I am looking for a friend too if you want to coorespond. My name is Pam Thanks.
Modified by Moderator-WB at Tue, May 18, 2004, 08:46:00
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Posted by: AAA7353 ®
05/18/2004, 13:22:04
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Dear Pam, Hello, and thankyou for your reply. I am sorry you are suffering too. I would be happy to correspond with you. I live on Long Island, not out east but closer to the city. My doctor thinks that I possibly am suffering from another illness beside the MS. Lupus and vasculitis. I did not put this in my original post. I am not at all happy about having to hear about another illness. The Lupus was said to be a possibility years ago but never got a definite diagnosis. Yes Botox injections are indicated for me if it is "true SD," my neurologist has put me back on my medication for spasticity. You may be on it too due to your CP. It is called Baclofen. The brand name is Lioresol. It helps relieve spastic and painful muscles. However, it loses it's effectiveness after a patient is on it a long time, and then the dosage must be increased. I worry about liver toxicity. So my doc stopped it for awhile. That's when my hoarneness became worse and very painful. God bless you Pam, keep your chin up. Use the computer and possibly use sign language. I am seriously considering it. I have been blind in one eye due to the MS and got all vision back. It's a good thing I do know some Braille. I might end up using Braille and sign language!! I keep in touch. Best regards, Angela
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Posted by: Bill Truesdell ®
05/18/2004, 11:12:38
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I have a friend who was first diagnosed with SD, then years later as being in the first stages of MS. It makes me wonder if SD can be an indicator of MS, or vise-versa? I also wonder if SD can lead to other forms of dystonia. I've been having slight problems controlling my head movements lately. I've had AD/SD for 14 years now. Any ideas on this, anyone? And good luck, Angela. My thoughts go out to you. Bill
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Posted by: Bill Truesdell ®
05/18/2004, 11:50:07
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PS: see more than one focal dystonia --- Keith (05/12/2004)
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Posted by: AAA7353 ®
05/18/2004, 13:27:01
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Dear Bill, Sorry about your friend and about your problems too. I have found this problem to be frustrating and embarrassing since people think I talk too much and this is whey I have SD. Have you been checked out via MRI for MS? Talk to your doctor, Bill. Thanks for your reply, I am happy I found these boards. I don't feel so alone. I do go on "Spotlight Health" for my MS. Great message boards for people with MS. Bill tell your friend ok? You can visit us too there. (Contact Angela for link. Moderator WB) click on Multiple Sclerosis and then Support Groups.
God Bless you, Bill and your friend. Angela
Modified by Moderator-WB at Tue, May 18, 2004, 15:29:29
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Posted by: Terrie K. ®
05/18/2004, 19:32:22
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Since the onset of low thryroid, I have been having increasing difficulty with breathing, shoulder pain, numbness in the right arm and now a bizare numbness/ pain in my left foot. Oh did I mention the loss of vocal quality, breathiness and strain during conversation. My neurologist diagnosed ABSD right a way. Anyway, my MD ordered an MRI today to rule out MS. Funny, when all this voice stuff started, the Speech therapist said she thought it might be MS. Who knows, I guess I'll fine out in the next day or so. I'm not sure whether I'd rather learn that it was MS or just SD with the rest of my body just falling apart.
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Posted by: teeda ®
05/18/2004, 22:40:53
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Hi Angela,
I've had neurological symptoms for the last few years & it looked like MS (weakness, some spasticity, paresthesias, etc), but I never got definitive results on an MRI. Over time I've developed movement disorders (moving my hands around in a dance-like motion, for instance) that my neurologist thinks are not likely to be caused by MS. And now there's the spasmodic dysphonia, which is my newest symptom (so here I am, on this bulletin board!) Lately, when I get my normal voice for a few minutes, it's quite hoarse, so I was interested in hearing that you have this symptom. I'm avoiding Botox until I know what I've got. Anyone else been told that they're "rare"? It's a consolation prize, I guess. Hang in there, Angela. It sounds like you're getting good medical care anyway. Are you able to work? -teeda
AB&AD SD / other dystonias of mysterious cause/ mid-Missouri
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