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Old 09-07-2015, 06:29 AM #9
Tb12 Tb12 is offline
Junior Member
 
Join Date: Sep 2015
Posts: 36
8 yr Member
Tb12 Tb12 is offline
Junior Member
 
Join Date: Sep 2015
Posts: 36
8 yr Member
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Kiwi,
Thank you so much for your support and knowledge. You have given me more information than my gp and neuros... One GP said how do you spell it and didn't even know what is was and my neuros didn't even go into detail about it..

I didn't know the CPk blood test was actually used as a pretty decent marker for it's potential like that information states coupled with the fact that no one in my mothers family has it is a great sign..

Even tho it mimicks all my symptoms I must remember they can be symptoms of anything neurological and most symptoms I would assume cross over?..

The neuros have ruled out ALS due to my last 3 emg's being clean and after 3.5 years I should have a complete tell tail ALS sign as that is no joke of a diagnosis...

Have you ever heard of Benign Fasiculation syndrome? Or maybe I should look into fibromyalgia and of course Lyme..

My big concerns besides the non stop body wide twitches are the postural and distal tremors when the muscles are put under stress and the joint pain in all my joints is on a scale of 10 constantly and they feel so unstable ..

This board is a great support and help
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