Peripheral Nerve Hyperexcitability (PNH) Community
neuromyotonia
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This patient support community is for discussions relating to Peripheral Nerve Hyperexcitability (PNH) and the various conditions related to it such as neuromyotonia (NMT), cramp fasciculation syndrome (CFS), benign fasciculation syndrome (BFS), Isaacs syndrome and others.

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neuromyotonia

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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3 Comments Post a Comment
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Avatar_m_tn

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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Avatar_m_tn
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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Avatar_f_tn
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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