Zygo

no, i dont have MG and I dont say this just because several docs excluded it but because i personally feel that this is not the issue. I have been developing a very sensitive gut feelin after all what I have been through and I think I can quite a bit rely on my gut feeling.

Ptosis and thymoma do not have to point towards MG in the absence of any other symptoms and labarotory result .
There is still a question mark to what could possibly have caused my CIPO and there is the possibility that I have a mitochondrial disorder that can also go along with ptosis etc.

i know that cooling an elevating the limbs can decrease the pain with erythromelalgia somewhat but when its really worse that doenst help either. moreover i have very poor microcirculation due to autonomic neuropathy and cooling too much just worsen the vasoconstrtcion.

Sorry, you are complex and as I am not as well versed in the many types of PN as other people here its hard for me to keep things straight.

I do understand trusting your gut feelings and your frustration. I was diagnosed with a variety of disorders over a period of around 3 years, I always knew the steroid was playing a role but could not get anyone to listen.

Judi