Posted by: Moderator-JB ®
01/28/2003, 00:58:03
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Carol,Blepharospasm is but ONE of many focalized forms of Dystonia. Think of it not as one part of your body that is affected, i.e., your eyes or limbs, but instead it is the brain (likely the Basal Ganglia) that is damaged and is sending out misdirected signals to various muscle groups in the body. Many people plateau at about a 5 year time period. Some have more body parts affected. I believe it has a bit to do with what caused the damage in the first place. (Only my opinion.) Read the following links closely and I think you will find some answers to your questions. Please e-mail me and describe what you are experiencing as I too have followed a line of 'progression' in the 6 years since I first experienced symptoms. Judy Related link: http://www.dystonia-foundation.org/defined/forms.asp
Related link: http://www.dystonia-foundation.org/defined/forms.asp
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Posted by: Linda in CA ®
01/28/2003, 08:16:29
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I certainly can relate to the question of what type of neck spasms equate to dystonia, rather than just "neck spasms", It is an issue that I have been trying to clarify with my doctors, who seem to be more at a loss than I am about the situation. I am also having difficulty with my hands and did receive a referral to a hand specialist. Hmmm - I wonder if he will know anything about dystonia??
Our lives are certainly not without questions. It seems the more doctors I go to, the more questions I have. I have tried the local movement disorder specialist, who was worse than the docotrs I have who admit they don't know anything. I wrote a complaint to the movement disorder organization, asking what makes them place a doctor's name on the list. Never got a response to that one.
Hang in there, Carol, and do let me know if you find some specific answers.
Linda in Ca
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Posted by: Carol A. Brown ®
01/28/2003, 18:21:31
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Thank you both for responding to my post. You know, when I was 21 years old, I was in a bad car accident where I broke the windshield with my head (before seat belts). My doc is pretty sure this is what has caused my problem. I did ask him if he thought this is what's wrong with my neck and back. He isn't sure. It is so damn frustrating, this curse of ours, especially when you can't get a straight answer out of anyone. My neighbor lady talked me into going to a message therapist with her. I had never been before and was curious so I went. I had a full hour message with her where she also gave me reikie (sp) therapy. I felt wonderful afterward and felt good for a full week. Maybe this is something I should have from time to time. I try to have the attitude that "things could be worse", but, you know, being the self-centered creatures we tend to be from time to time, it's hard to keep thinking that way. I am going on my fifth month, though, without botox, so this is good. I was having injections every 3 months. I do have a wonderful doctor who is quite good at what he does. He is also a very caring and concerned man who is very dedicated. I realize that in my case, I guess it's just hard to know exactly what is going on. Carol Brown
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Posted by: colleen ®
01/28/2003, 19:46:51
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I was diagnosed with beb about5 years ago.
Was diagnosed with Parkinson 3years ago.
I have dystonia in my neck also.I get botox
for my eyes and my neck.
My Doctor told me that parkinson could have
caused my beb.For every 5 people with PD
one will have dystonia.Both of them together
hurts.
Colleen in IL I am going 3 months this time
before i get botox. Hope i can make it that long
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Posted by: Linda in CA ®
01/29/2003, 08:40:10
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I have many of the same qustions as you about the neck/back and several other things that have been happening - intermitent voice changes and ..... All so confusing.
I am so jealous when I hear that your Botox lasts so long!!! So you do have soemthing to be thankful for. Mine takes two weeks to kick in and then last 4 - 5 weeks. So for 2/3 of the time I am "shut down." That is with the help of two meds. Without the meds, the Botox is nearly useless.
I also do massages and chiropractic, which helps - but only temporarily. Thank goodness I was born stubborn! And to think that my parents used to think that was a bad thing!!
If you find any answers about your neck, please let me know.
Linda In CA
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