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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 |
hey topsie i found this site through a friend, my husband has spinal myoclonus, its gr8 2 no that someone else out there that has it. My hubby feels quite isolated at times, he's in constant pain. I dont no wat urs is like but hubby is jerking and jumping almost all day even in his sleep, his arms also jump and he has just started doing this thing with his tongue and also grinding his teeth,anyway i could wobble on 4 ages about this condition its a horrible thing 2 have hope it helps a bit x sammisox