Thanks for your interest and comments glen.

[QUOTE=glenntaj;355006]--have you been worked up and tested?
(have they done full MRI with and without contrast, any evoked potential testing, lumbar puncture, to look for central nervous system demyelinating disease, and/or an infectious process such as you suggested?), and/or some sort of rheumatologic or connective tissue/vascular autoimmune disorder (have you had extensive work-ups for the family of anti-nuclear and related antibodies?).

Its not that easy to get worked up and tested here in Australia. Its very hard to get an MRI done. But the ENT specialist who focused on the myoclonus palatal and pharyngeal (nasoendoscopy) did order one.
It was an
MRI Head C+, MR Head, MR control (whatever that means)
looking for cause of myoclonus Report says;
MRI BRAIN (mi) No cause for myoclonus identified.
Itake it evoked potential testing is different from EMG? I've only had EMG on large leg, arm wrist ankle and that was it. No lumbar puncture done
NO MRI ever done on neck or spinal cord.
How does a lumbar puncture help identify demyelination?
I have had some rheumatological work done but not extensive;
RH factor of 23 marginally elevated (<20) and is of doubtful significance.
First time ANA done it was negative.
Neurologist ordered some recent tests and he did call me to tell me that my
ESR or CRP or both was up (these have always come in high in the past) and he said the ENS was up. I'm not sure what this means and hope to discuss it with him at next visit.
What sort of panel should I ask for if the ENA has come back high?

Trouble is, it's very hard to distinguish a peripheral nerve problem from a central nervous system one--they can produce exactly the same symptoms, and usually diagnoses are arrived at (if they are arrived at) by exclusion.
I see. I suspect my pain has central features since I have described my pain to my husband over the years as
"It doesn't matter if there is a hell or not since I'm being continuously being burnt alive on earth anyway."
I know what the triggers are and I know that the BURNING and CRAMPING happen together. WIth lesser burning there is spasms.

Thankyou glen for your post again. It was very informative. Im not at all sure the way I should proceed. I think the medications themselves become part of the disease and perhaps we develop allergies to them. Also witdrawal from medications can cause exacerbation of symptoms.

I definitely see colour and temperature changes in my hands and that is indoors. Same for face. I get what I slowly discovered is called Dermatographism, so this is another clue.

None of it helps with slowing down the process that is occurring in my soft palate and surrounds (pharynx and larynx) which I am certain involves blood vessel engorgement of some sort resulting in scarring.

B12 and folate normal EBV IgG positive
The dysphagia report mild oro-pharyngeal dysphagia . Myoclonic activity appearing between swallows is impacting on rapid swallow initiation. recommendations; soft moist diet /thin fluids/ alternate b/n food and fluid boluses and neck extension to aid swallow intiation.

My neck feels weak on the right side, like I always want to rest it against something.
many thanks again