Hi - I am Diane and am new to the group

[Guest guest]

Hi, my name is Diane and I am new to the group. I met Kim through another group and want to thank you again Kim for referring me to this group. I have spent the morning reading the 16 emails I received and I must say I have spent time alternating crying and smiling, I am so excited to have this information, yet deeply saddened by what these drugs have potentially done to my body.

I have a neurological disorder called myoclonus. It came about in the night on Dec. 23, 2003, this is a movement disorder characterized by jerking movements, I have had literally every limb/head/neck move that is possible. I have been put on several different medications to help, none of them have helped, none of them have made the movements stop and several I have already safely gotten off of, some with my neurologist's help and some without. This past year I have gotten off of 7 meds that last being the one I am currently working on which is Pamelor. I was on 100mg of Pamelor a day, I have cut back to 75 as of 4 days ago, this is the smallest increment that I can cut at a time as my capsules are in 25 mg increments. This was prescribed for severe nerve pain/neuropathy, which preceded the myoclonus by one year. Severe nerve pain/damage very often accompanies myoclonus, for what reason the doctors cannot tell me. I have seen two "world specialists" in movements disorders so far.

Prior to Dec. 03 I had never taken a neuro drug, not an anti-depressant or anything for movement, neuro problems etc. I do believe I can accurately say that the myoclonus was not brought on by drug use or withdrawal. My older sister also has myo and began it abruptly and at the same age I did, 45 yrs old. Mayo Clinic thinks it may be a genetic disposition in our family as my nephew is now having symptoms but they do not know the gene to test.

Thank you to anyone that can give me help with their story. If anyone has myoclonus I would be very interested in hearing from you.

Diane