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"positional"- myoclonus or dystonia

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Unread 01-29-2010, 03:16 PM   #1
Jerky_Chris
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Join Date: Dec 2009
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Default "positional"- myoclonus or dystonia

I've posted before about my muscle myoclonus, twitches & fasiculation-

Already had tests..(EEG,,,,EMG...& MRI)---all normal-

Both my neuros tell me that what I have....(My back....shoulder & neck muscles ONLY "act up"....when reclining..)...on my back..or on my stomach!

Drs....say....the HAVE seen it--not uncommon...(I never heard of it...)---but that it's not serious---tho they have no idea WHY this happens! Just that it makes it really difficult for me...to sleep-!

Anyone else have anything...like this?

HOPING to hear from some others who have experienced this...or have a friend...who has? Thanks--Chris
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Unread 02-21-2010, 09:55 AM   #2
Worriedmom5261
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Hi, I'm new to this, my 9yr old son has started having abdominal jerks (Dr said Myoclonus) for going on 3mths., we've done the EEG and MRI's and all came back normal. Dr started him on clonidine at bedtime and he is in his 2nd week of taking this with no improvement that I can tell. However his does not bother him during sleep but seems to be more severe with stressful situations, excitement and nervousness! I feel like the Drs really don't give alot of thought to it but just want to write a prescription and keep the assembly line moving!!! They have not even done blood work to check for abnormal levels which I have read can also be a cause. We are planning to see Pediatric neurologist this week and I'm going to question that???
Good Luck to you,
Worried Mom5261
Already had tests..(EEG,,,,EMG...& MRI)---all normal-

Both my neuros tell me that what I have....(My back....shoulder & neck muscles ONLY "act up"....when reclining..)...on my back..or on my stomach!

Drs....say....the HAVE seen it--not uncommon...(I never heard of it...)---but that it's not serious---tho they have no idea WHY this happens! Just that it makes it really difficult for me...to sleep-!

Anyone else have anything...like this?

HOPING to hear from some others who have experienced this...or have a friend...who has? Thanks--Chris[/quote]
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Unread 11-20-2012, 01:04 PM   #3
McDo
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Join Date: Nov 2012
Posts: 1
Default similar problem

Hello
I have also developed involuntary, sustained contractions of my neck muscles when lying down (my head tilts painfully all the way back).

I'm having trouble getting a diagnosis
Have you had any luck?
Doug
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