after I'd been diagnosed witn an 'ideopathic progressive sensory PN', which changed to CIDP, while I found this and some preceeding boards. I have felt this a 'home' of sorts as many here, like myself - developed before or after the PN some other, varied what I call 'cross over' conditions - ones that mimic each other in many ways and may or may not be related.
That all of us aren't totally solely PN affected, we tend to LOOK at other conditions, the research going on there and the possible relevance to each individual as a WHOLE. That there is research and advocacy going on with folks who have MS, Parkinsons, and dozens of other things it's good to you that we are part of a whole, and not totally isolated, whether what we have has a 'NAME" or not. Key to it all is to try and get a handle on what all is going on with you and understand it enuf to cope [without getting a medical degree of course!]. When you get there, then TREATING it in the best ways you can, getting the best tests to TREAT as well is where are are at.
It takes a while to get diagnosis, I went thru 7 neuros total to get and keep my diagnosis. #1 I fired, I felt he had made an absolute determination about my diagnosis, didn't explain much, and offered no hope. So, #2 started testing [after a 'second opinion' visit] and believed me in a forthright manner. I pushed things along w/#3, [a second 2nd opinion] with a concurrance of #2's approach, but he was able to rush things along as he was head of an area univ neuro dept. #4 a neuro-opthamologist concurred but was seen regarding visual issues. #'s5-7 related, to continuing IVIG and I saw a neuro who'd left #2's practice and wanted to 'prove' #2 wrong -which sent me to #'s 6& 7 [at another Univ Neuro Dept, head and assistant] who at first could not believe that I had the CIDP diagnosis as I wasn't in a wheelchair! I convinced him that maybe? because I'd gotten the IVIG soon enuf [and pt as well] THAT was why I wasn't IN the chair? DUH!
So, essentially I've 3 definitely on my side, 2 who would want to do more testing [for their own satisfaction] to totally agree, but say OK, and 2 I would never want to see again in my life. I'm lucky in that I'm in a big metro area and while I might have to drive over an hour to see key docs [tho I don't] They are here to be seen. It is harder for many who aren't in such populated and well 'medically rich' areas. IN summary, you ask 10 different docs and you are gonna get about 7-1/2 different opinions....[the insurance helped too!]
That your docs are 'crossing off' [I HOPE!] cancer as a possibility from the 'lists' says a lot about them being thorough. It won't change much how they treat you tho. Now, whether you feel comfortable talking with a particular neuro is a whole different ball-game!
As for your 'imagination' running away with you? The first year I had this, that Christmas holiday after I'd gotten this, I wasn't really diagnosed yet and I was SURE I wouldn't last to the next holiday -but that was as I was changing from #1 to #2 neuros, and beginning all the real testings I should have had from the get go. I was scared beyond silly stupid and the numbness was 'marching' up my body and getting worse. Seeing the 'right neuro' for you also, I believe has to include one huge dollop of LUCK! I hope and pray that you get LUCKY! - j

PS Aussie, thanks for re-telling your own wonderful experiences. That was soo much more concise than when you first joined! Go GOOD PERSON! Knock 'em over!