Paraneoplastic syndrome
 

I have been diagnosed with paraneoplastic syndrome. This means I have a hidden or "occult" cancer that cannot be found. My immune system in attacking this cancer has also attacked my CNS and peripheral nervous system as well. I have severe peripheral neuropathy.

This hidden cancer is also releasing various hormones that are wrecking havoc
on the rest of me. My blood pressure is through the roof, I am growing hair on my face that will soon have me looking like the "wolfman" My hair on my head is falling out. I have developed cystic acne.

Does anyone have any experience with this ?

Where can I find more information. Some statistics show that this syndrome
leads to death. The only cure is finding the cancer and removing it.

Ther is supposedly a slight possiblility that rehab can help with the
peripheral neuropathy after the cancer is removed.

Hello jeanayre,

I posted this on your other message in the "Welcome" thread.

First of all, welcome to the Neurotalk forums. There are lots of wonderful people posting here who might be able to offer support and information.

I know little about your condition although I did just run a search. I'm not sure where to direct you exactly as there appear to be a number of different conditions that fall under the syndrome. It also appears to be exceptionally rare.

As you mentioned Peripheral Neuropathy I'm posting the url for that particular forum here at Neurotalk. That may be a start.

Peripheral Neuropathy Forum

I wish you well.

p.s. It's worth checking out the PN forum for now, but keep checking back here in case someone comes across your posts that knows more about your conditions. :hug:

NORD (National Organization for Rare Disorders) has a page regarding Paraneoplastic Neurologic Syndromes. You've probably seen that already but here is the url just in case.

Paraneoplastic Neurologic Syndromes

I understand where you are coming from!
 

I have an autoimmune neuropathy....called CIDP [Chronic Inflammatory Demeyelinating Polyneuropathy] A mouthful? Yes! I came down with it five + years ago, diagnosed four+ years ago, then two years ago diagnosed with a cancer.... I suspect that it mite be para-neoplastic? But at the time, the docs did not persue that avenue at the time, because the need to treat the neuropathy [aggressive] was far more important. Oh well. Both are being treated....the cancer and the CIDP with medications and therapies.
I do think that you MUST find both an oncologist and a neurologist who will work together ...possibly add an endocrinologist into the mix? These folks if they work together can help you to many degrees.. I know that my own docs are finally [after 2+ years!] are working, or at least communicating w/each other.
What has happened to you has a]reprogrammed some of your immune system to work incorrectly...wonder why? and b] has been a huge invasion and alteration in terms of how our underestimated beautiful machines [the human body] work! The body gets unbalanced and the need to go all out to find ways to get things back in balance physically, metabolically and emotionally are not easy things to do! How to do that? Ask questions, read around the different boards and LEARN! The 'sticky' portions at the top of each forum are a good place to start learning.... anything in 'blue'? Click it on and you should get a new screen w/a different info site on it. Some of it tho, can be heavy reading and hard to take in all in one sitting. When I first got on line and discovered places such as this? It took me over 3 months to read it all! And also posts in my areas of interest/concerns. Reading about other neuro issues is eye-opening too? As it shows that none of us are alone in our pain.
Once you have read more and have those questions? And remember, not ONE question is too silly to ask! Believe me, I've asked some good ones? Know that many will be here to help you find the info you need to know to do what you need to get the treatments and help you need! :hug::hug:'s Hang in there! - j