Hi everyone--
In the last......2 months...I've seen 4 different Neurologists...! (TWO when I went out to Beverly Hills....in the same group)---as well as my regular neuro----& chief neuro of a hospital here in Philly--
Test---I've had......Brain MRI- EEG EMG blood test for thyroid.....ALL....normal-! As well as my neuro exams-! BUT---the 'myoclonus'....goes on--! Official Diagnosis.."Idiopathic Positional Myoclonus"--meaning...."idiopathic"...(no known cause or pathology)...."positional"....(gets bad when I lie down--like going to bed!) ...."myoclonus"......well--you know that..."muscle contractions"......but I mean strong....and all over the place---my neck....upper & lower b ack....ab
They are strong muscle contractions...in my back...(by BOTH....left & right)--shoulder blades---down to my lower back....abdomen...diaphram....arms & legs..(where they are more like "tonic" cramps)---
My neuro says.....neurologists do not know "exact"...reason why they occur...BUT ...has something to do with "sensory loops"...(?) -----But....ALL the neuros tell me...not to worry.....! But--they bother me! And still...(to a degreee)---still concern me!
Two of the neuros..& my very nice...."nurse practitioner"....told me...."Robert,,,.....They will go away....as quickly and suddenly as they came on!"
That was nice to hear---since I've been having this problem since mid December...(along w the "brain zaps"...Dr. attributed them to the likes of "hypnic jerks")-----
Anyway--past Monday--Tues.& Wednesday----------I felt great! Most of my myoclonus...just stopped-----But...then...Yesterday..Thursday.....they came back.... ...like a 'demon'....waiting in the dark!
OK--I need someone...anyone....the more the better! You know...the feeling...."I'm NOT alone"---!
Anyone here.....ever have this myoclonus.....esp when laying down..(I'm NOT talking about seizures.....just plain ...myoclonus)----That.......was with them...& just left!
Once I'm asleep...I';m OK----So---Drs...recommended......along w my...Valium...to take 2 Benadryl-!
It's helped---But--people......I'm driving myself...AND my wife crazy...w my worry! Perusing the internet! Returning early from my winter in California...twice! I'm scared.....& upset!
Will be seeing my 2 man.."neuro team"...next week-------But..I'd LUV to hear from you---get back...please- --Anyone with..."idiopathic positional myoclonus"? Get back---someone...anyone..please? Kindest regards---Robert