Searchable Database

I'm still new to this illness, and my pain is infrequent now, but I am not adjusting to the drugs well.

Here is my take, and please respond if I am barking up the wrong tree. Although we all have a diagnosis of GPN, there are many different causes, many of which are unidentified. There may be several different relief treatments, depending on individual causes. Doctors, even some neurologists seem like a backyard mechanic working on a Volvo, due to the rarity of the illness.

For instance, my neurologist said lesions at the base of the skull cannot cause this, although many reptable web sites (Mayo, NIH, etc) disagree. My feelings are ,if there is a universal hope for all of us, it would start withh some sort of a seachable data or spreadsheet. We could voluntarily input relevent facts concerning our case, and perhaps the sum of all our symptoms(and cures) could lead to a better understanding of our illness, and therefore a step to wellness. I am barely into this, and I am already tired of the general ignorance of the local medical community. (Dartmouth Hitchcock in NH is very reputable). For a rare illness as this, our individual attempts at wellness are subject to the random fate of eventually happening upon the right specialist for our illness. My first impression of our dilemma is that such a database might be a powerful tool towards wellness.

i am with you on this! i have been told that there are symptoms i ave that arent GN related but i very much beg to differ! I wish this would happen!!!

I know exactly what you mean, there was ( there may still be) a face pain quiz online somewhere and depending on your areas etc, it gives like a hypothetical diagnosis, but that's for TN/TN2/AFP.

I've thought about this a lot, in doing like a big survey of all the face pain sufferers out there, but I'm certainly no authority nor would I know how to even begin collating and making sense of it. I'd also be interested in the negative effects of certain anticonvulsants on facial pain. But that's something else entirely.

Anyway I think it would be a great thing to have in place I just wish I knew how we could go about getting something like that in place.

Much love

Gracie x x x

I would be more than happy to share my information. There has to be answers somewhere and if we have to be the ones to start finding them by compiling our cases then so be it!