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Originally Posted by Topsie
Hi I have both Palatal Myoclonus (only 1 in 2 million people have this) and Spinal Myoclonus (only 1 in 3 million people have this). I am searching and really hoping that there is someone else out there with these conditions with whom I can get some support and relate to about these difficult conditions. Please write! Thanks so much.  Topsie |
Hi Topsie, I had myclonic jerks after I got RSD following surgery. The are involuntary jerks, jolts of the nervous system related to the Limbic part of your brain. I had them at night too, go thru my body and raise my head right off the pillow. Even relaxing watching a movie, both legs would jerk around.
I saw a new Dr. a neurologist, psychiatrist, and pharmacologiist and still seeing him-6 years now. He raised my neurotin to 3200 mg. and that totally stopped them. I gained weight , which is a side effect. I asked him to go off of it and we gradually did about 2 years ago. I've just now had a couple of them at night.
I know they are scary, especially when they come while we are sound asleep. RSD affects the involuntary organs. Have you been checked for that?
We also have burning pain, blood pressures changes, memory problems, sometime grasping for words while talking. skin red dots or lesions. some joints can freeze up.
Glad you found some others here for support. Am very sorry you have this condition. Take care, loretta