Zygo,

Thanks for sharing your experiences with me. I wouldnt be too sure about what you have been told. Paraneoplastic syndromes can occur at any time, up to 1-2years before there is evidence of a a tumor, and after diagnosis of a tumor.

Wich type of neuropathy do you have?


I had some antibodies testet and they came back fine but there are many more unsual antibodies that were not tested. Moreover, except for SCLC antibodies are often absent in paraneoplastic syndromes. In any case, negative antibody testing does not rule out paraneoplastic neuropathy.

I don't want to lead you down the wrong path if we have had similar symptoms for different reasons, as Mrs. D said, you do have typical symptoms of MG. But as you also said, you may have more than one thing going on and maybe something will help, I've learned a lot here from reading different posts.

I didn't have any noticeable PN symptoms until 1 1/2 to 2 years post surgery. The link that Glentaj provided did say there could occasionally be years between diagnosis and symptoms but I've never been able to find anything that clarified whether it could be that long AFTER the cancer and I didn't think it was likely. I also had septicemia in the hospital and between that and the surgery and prior pneumonia had massive amounts of antibiotics. Also in Glentaj's llink was the statement that calcium channel blockers could intensify that type of PN... I was on them when the PN symptoms began and they were so severe with that med that sometimes I could barely walk in the morning.

I've been Dxed with sensory neuropathy but have not had the sophisticated testing that many here have had, just 2 nerve conduction tests at a rehab clinic. (The PCP I used to have didn't like to refer to neurologists unless it was for stroke, ect., My current one offered a referral but my symptoms are better and I declined for now). I've never had any related bloodwork, I think they feel as long as I'm cancer free and breathing other things are secondary.
I had a very hard time getting them to pay attention to my complaints re: the steroid. I started having what appeared to be some autonomic problems and cut the dose myself in desperation and now they are all telling me to wean off it. I really don't know if I'm have autonomic neuropathy symptoms or adrenal problems, I just improve with less steroid.

Have you tried cooling you feet to help the erythromylagia symptoms? I started sleeping with my feet poked out from under the blankets and going barefoot all the time around the house. I later read on a site for that a lot of people do it, it really helped me.

Do you have any entrapment symptoms in your hands, carpel tunnel, ulnar, etc? Most of mine seem to have been form the steroid making something swell (tendon?) and pinching nerves. I can still feel a little but am much better on a lower dose of med, I couldn't even identify the entrapment symptoms on a higher dose, I just had diffuse pain everywhere and also had difficulty lifting my arms at times. Are you still having those problems off the pred?

I don't know how familiar you are with this site, there is a ton of info about different types of neuropathy. I hope you and/or your doctors can figure some of it out, I know what it feels like to be in pain and not get help.

Judi

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