neuromyotonia

[uk2]

Hi professor nicloson and others

I have been ill for nearly 3 yrs now i have had a vague dx of fibromyalgia but my GP (i live in the UK) feels it is not this and has booked me in to see a neuromuscular consultant in a few weeks time. MG and neuromyotonia are in question my sx are
sweats day and night,twiching jerking muscles,painful muscle contractions in every part of my body (these wax and wane) muscle weakness in limbs problems swallowing,chewing makes my jaw ache,when i wake my hands are in tight curls and the same with my legs which causes stiffness in both,fatiuge in myself and my muscles as there never at rest.problems sleeping and then sleeping too much.

i've had MRI all clear in 2007 and this will be the second time i've tried to find out what is wrong. i am on baclofen,fenntanal patches and sertraline.

does this sound like neuromyotonia aka isaac's syndrome? or another neuromuscular disorder

i've been tested for thyroid and hormorne lupus and MS all negative.

how do they dx neuromyotonia?

sam

[uk2]

Hello dr nicolson,

Thank you for your time answering the my post.I have heard this before from people on forums who have had neurmyotonia that they felt better on a certain antibiotic i dont understand this at all but will look on the site you mentioned, there is such lack of any information on this condition and what causes it and how to treat it.

samantha

[Garth L Nicolson, PhD]

Neuromyotonia is a vague and generally not well-understood condition that could be due to a number of factors, such as neurochemical exposure, chronic neuro infection, neurotoxins, etc.  Patients with such problems often are often eventually diagnosed with atypical ALS and other neurological diagnoses.  When neuromuscular problems are present with no known etiology or exposures, we generally look for neurotrophic infections, such as Lyme Borrelia, Mycoplasma, etc.  Such infections can invade the peripheral (and central) nervous system and cause all sorts of problems in nerve transmission and excitability.  Usually such patients have major relief of signs and symptoms if the infections are properly treated.  Unfortunately, in the UK there is not much in the way of expertise on the type of infections that could be involved and their treatment.  More information on chronic infections and neurological and neurodegenerative diseases and their treatments can be found on our website, www.immed.org