A few more questions - sorry!
 

My neuropathy has now well and truely reached my face. Both cheeks (yesterday left cheek was new), chin and today across the forehead I developed an altered sensation. Does this mean that the 'cranial nerves' are involved or is there some other process happening? Does this arise in the brain? If so, is it something that could be detected on MRI (without contrast)? Yesterday I also had a couple of very brief bouts of tinnitus. It may have been entirely coincidental but could it be related?

As I'm going to my second only appointment next Wednesday with my neurologist to get results of all the tests done so far, I need to know if there are any vital questions I need to ask, if all the tests come up 'normal'.

Some of you who have been given the "we can't find anything abnormal" line, what has been done subsequently to get to the bottom of the problem or does the searching stop there, and you get given the 'idiopathic label'?

Megan...
 

I have PN in my face too. I had it more in my face & head than anywhere else. My MRI was clean and so were 2 CT scans. It may not be the cranial nerves per se, as there are tons of peripheral nerves that are also in the same area.

The brain and spinal cord are the CNS, not the peripheral system. Do you have problems with smell,taste,eye movement issues? I didn't. So my neuro said no cranial nerve involvement, but I'm not 100% convinced as I have eye twitching,heightened sense of smell,and pain in my head and cheeks.

As far as CNS involvement, hard to determine,but upper body involvement and face/head often signify some CNS involvement, but not always.

Hi Megan, do you have a neuro that is a PN specialist ?, if you have great, but if not i would strongly urge you to find one, if this neuro throws the towel in after a few tests and if you live in Victoria i can put you onto a top one in Melbourne, as a good PN specialist will do all the tests available to find the cause.
I would check out Liza's charts http://www.lizajane.org/ against the tests that this neuro has done so far, if the neuro says " it's idopathic no more tests ", then you will have questions as to why other test's haven't been done, if any.
good luck, i hope your neuro has found the cause anyway.
Brian :)

Hi megan
 

I too have altered sensations/numbness on my face, it used to be only on the left side but has spread to the right side as well,it is mainly on my upper cheeks and eyelids but also it can be on my forehead and neck, my MRI came back clear. I have it on other areas of my body but the face is the most stressful when it comes on (the altered sensations/ numbness come and go but seem to be staying for longer and longer periods), I also get brief periods of loud tinnitus usually in my right ear that goes away after a minute or so (I have permanent tinntus in both ears but it is and not really noticable only when it is very quite)

Thanks...and to Brian
 

Thanks guys for your responses. :)

Brian I have no clue as to whether the neuro who I have seen only once before is competent in PN. So in the event that I reach an impasse next week with the neurologist, I would very much like to have the name of the PN specialist that you suggest. I am in Melbourne. You can send me the details in a private message if you prefer.

Megan, I sent you a private message.

A question for everyone and for Mark!
 

Can I assume that people who initially have PN come to this 'PN' section of the NeuroTalk board and then as they get diagnosed for specific underlying causes of their PN then they tend to drift off to a board that is more specific to their underlying condition?..........

......which leads me to ask whether most people who remain on this PN board have an 'idiopathic' diagnosis.... or because the PN remains with you (despite the underlying cause) then you tend to come back here for both support amongst kindred spirits, as well as, to help complete novices like me? :confused:

I know I must sound really ignorant but this is all so new to me!:wink:

Also Mark your symptoms sound a lot like mine. Have you been diagnosed with a specific cause for your PN yet? Did you feel very unwell and fatigued when this all first started? I have been so unwell now since August 3rd and prior to that was quite fatigued for three weeks, despite being on holiday.

I have been on the forum 2 1/2 years.
 

I stayed here because I desperately needed support. I also want to help others who need help.

When my PN came on and for a long time I felt very unwell. Generalised malaise, fatigue,just plain sick. I beleive it was my autonomic system out of sync. I have heard many people with PN describe the same thing. Just very very unwell, aside from all the altered sensations and pain.

It does get better, hang in there. It just takes a fair while.

To Aussie99
 

That is somewhat comforting to know that you also felt very unwell when first confronting PN. Did the doctors ever work out what was the cause of your PN? I suppose I keep wondering if there is anything more sinister going on, as the neuro has tested for cancer (CA125) and another cancer test.

I'm trying not to let my imagination run away from me while waiting for the results.....but I keep thinking why do I feel so sick? So perhaps this is normal to feel very unwell at this time while the PN is still advancing.

My PN effected my face for a short time. It was weird, really. I got this terrible burning sensation, I could feel it, but it could not be seen by anyone else--it didn't turn my face red or anything, but it felt so terrible. My face actually hurt after the burning went away. It happened on and off for a few weeks and hasn't happened again since. Well, now that I mentioned it, I will probably be revisited!:eek:

To Megan
 

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

Hi Megan
 

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.

Megan I found the help of these people
 

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!