Posted by: In Indiana ®
02/06/2010, 06:19:35
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My son and I have very similar complaints. Not the tongue issues, but different tics that go along with the facial and neck spasms. Pain was a huge issue for us.
Has your doctor ruled out myotonia? (in our case, it is paramyotonia congenita, which commonly affects the facial and upper body muscles).
Dystonia and myotonia are so confusing - sometimes I think they are used to describe the same thing. Myotonia is muscles that are very slow to relax, or won't relax, and dystonia is sustained muscle contractions causing twisting, repetitive moments or abnormal posturing.
Dystonia is thought to be the result of abnormal brain activity, and myotonia is an issue with the muscles themselves. Dystonia should be helped by Botox, but with myotonia, the muscles can still move despite being "paralyzed" by Botox, because the muscle's action potential is so high, the muscle doesn't need nerve stimulation in order to contract.
Do you find anything that makes your problem worse or better?
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