Dx With "Idiopathic Positional Myoclonus"-PLEASE-RESPONSES NEEDED-!

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Wotan
Regular Member


Date Joined Jun 2005
Total Posts : 463
   Posted 2/19/2010 9:13 PM (GMT -6)   
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-!  smile    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!)shakehead ...."myoclonus"......well--you know that..."muscle contractions"......but I mean strong....and all over the place---my neck....upper & lower bshakehead 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"...(?)eyes -----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....mad ...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---Robertwink
 

Terrodile
New Member


Date Joined Feb 2010
Total Posts : 1
   Posted 2/21/2010 3:25 AM (GMT -6)   
May be this is not an Epilepsy.
Do you sleep before you mioclonus starded ? How long it ? Do you awake immediatly ?
What is you age ?
Have you any effect from Valium ? Have you any problem whith you backbone (osteohondrosis, etc) ?

Best regards
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