I found this board 4 years ago. I've stayed even after I was correctly diagnosed with Sjogren's Syndrome. I share my time between 3 different boards, even moderating one of the boards. Whether you stay or not after you are diagnosed is really your decision. Some people are comfortable just staying here even after being diagnosed. Some just drift away and some go and come on a regular basis.

But you are always welcome here. If we can help you in your journey to finding help, then your combined knowledge with ours to help another new person will just make this board stronger. The board develops a personality made up of lots of personalities. Some personalities perhaps have an undesirable nature to them, but there is always some grain of truth or help even in them.

As a moderator of a board and having to read every post of that board, I've been able to see more of the interior of what happens in a board. I hope I explained some of what you were asking.

Billye

I have seen 3 well known neuros,and have gotten 3 different diagnosis. The first one was "spreading cortical depression". This doesn't have to do with being depressed. It has to do with your brain cells in the cortical region of brain not working properly. But that diagnosis did not explain why I was in so much pain.

The second neuro said "something about neuropathy of Walldenberg". Very hard to find info on that as well,and he was also guessing.

My third neuro was a small fibre specialist, who ran a bunch of tests which I passed,but said that the presentation which involved the entire body within 2weeks, and had some degree of dysautonomia, rather than autonomic neuropathy, was befitting of a Guillian Barre syndrome. The recovery is also patchy and segmented which also fits me too.

I was ill before the PN came on I had both bronchitis/and a bacterial infection in my stomach.

The neuro beleives that when my immune system tried to fight off this infection through a process called "molecular mimicry", it mistook my PNS as foreign, well due to similar molecular composition,and didn't shut itself off until it basically destroyed that too.

When it happened, I was very very ill. I can't even really describe how horrible it was because I think a part of me has blocked it out of my memory.

Basically I believed I was going to die,and started to make preparations such as getting all my affairs in order. I was hospitalised and an entire team of doctors including a top neuro,couldn't figure out what was wrong with me,but I knew in my heart that I was in trouble. That's also when I seemed to have lost the trust of my husband, as finally they threw out there, what was more likely that I had some mysterious illness that nobody could identify, or that this illness was manifested by my emotions and my mind. They then sent a psychiatrist to speak to me,and I passed the exam. But my husband never believed me again, and I never mentioned PN to him again. I realised it wasn't going to stop me looking for answers nor a cure. And frankly I didn't care if anyone believed me, I knew myself well enough to know that this was real.

When I got out of hospital I was at home for a while, and I was googling things such a nerve pain,nerve damage, etc, and had stumbled upon a Forum. I started to tell the folks on the forum what had happened to me,and I got support and also answers.

That was over 2 1/2 years ago, and thankfully I am still here. I am not disabled and I work full time and have a family. I have my good days and I have my days from h#ll. But at least I am here and I am fighting back and I am even getting better.(very slowly)

I must admit that I also believe in personal prayer, and the prayer of family and friends that has seen me through from that day to this. So I am thankful and in many ways lucky. This illness sucks but it could have been so much worse.

I recommend that you read the stickies and follow the advice in the stickies,and obviously keep posting. Look at your diet, your supplements and look at your overall health at this moment. Is there any co-condition? What was going on before the PN? Were you sick,did you have any toxic exposures? What was your health like before PN?

All of this is significant in finding an answer to the "idiopathic", but alot of us never really know for sure.

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!