230948 tn?1235847929
neuromyotonia
uk2
Hi All

i've been ill for nearly 3 yrs now i thought i had MS but tests are negative i am going to see a neuromuscular consultant who specialise in MG and channalopathies in a few weeks.

I have sweating,muscle contractions that never relax in my whole body but limbs and trunk the worse,aching jaw,swallowing and singing hard get a hoarse voice,have constant lump in throat that makes swallowing painful, fatiuge so bad and my limbs feel like there solid and stiff like concrete i wake in the night or morn with my hands in a tight ball dug into my hands and my legs curled tight and covered in sweat.

i have had ent test,mri,thyroid,hormone i think a neuromuscular consultant is finaly in the right direction.

what is the difference between neuromyotonia,issac;s syndrome,CFS,and BFS?are these not all the same?

i get pain with mine does this mean it is not NMT? but something else and if so what?

any advise would be great.
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uk2
Your symptoms sound consistent to Neuromyotonia / Cramp Fasciculation Syndrome
You can Google the Isaacs Syndrome Chat Centre Board. I was disagnosed with 18 months ago
Threre is an excellent chat there Isaacs Neuromyotonia vs Cramp Fasciculation Syndrome
you would be most welcome to join us.

Rick
Sydney Australia


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Rick I'm in Ballina, diagnsoed 3 yrs ago with CFS, now havign a difficulty with my swallow, I have a neuro in Brisbane, but maybe you could suggest a better one
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Rick: Do you have a chat group?  I would love to connect with people with cfs or pnh.  I am in Tas.  There doesnt seem, to be many people down here who know what its all about.  :-(
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