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'?

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

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 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.

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?

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

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 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.

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!