Hearing all your stories of Limbo at least makes me feel better that I'm not the only one.

Thanks everyone :grouphug:

Idiopathic Hypertrophic Pachymeningitis
 

It took over a year, 2 different brain surgeries, any and every specially doctor out there finally Baptist hospital could not DX my disease ,meetings sending test to another state and no one had ever seem anything like my condition, finally my wife asked if we needed to go to Mayo or John Hopkins hospital and the rhemuatory doctor said let me call another doc here at Vanderbilt Universary Hospital and see where he would direct us, this was a brain cancer doc,we know it is not cancer... but he gave him a name of a guy who is in the Vanderbilt Group over at the MS Clinic, got the appointment, all test and MRI's Spinal Tap results everything I had been tested for with neg results were sent before the appointment, walked in he asked a few questions printed out a page on this IHPM and that was my DX everything it said I had, I was happy to have a name of something so rare, but it had a name....Then treatment began I was told this would be trail and error for the coarse and then we finally found a medicine that helped after all the high steroids and other drugs, called Cellcept I have been on it for nine months, things are better not a miracle drug, but I have improvement with this disease.

Interesting topic/post brought back today...I think about this question myself, since mine is all hypothesis and I wont do any further testing.

Why bother??

Results are the same, pain meds, no cure, etc.

Sometimes I would like a "label" but most times I realize a label wont help. Now if there were more hope for a cure if I had a label then I would probably pursue it more.

I have had PN in my feet for over 15 years. I know that it is probably genetic as my Aunt, Dad and Sister all suffered with it. I have been able to manage it using good diet and supplements. It is now just in my toes with no pain, just numbness and sometimes tingling. I am fine with not knowing the actual cause as it really doesn't matter as there is really not much that the mainstream medical community can do about it. I have not had extensive tests as I didn't want to waste my money.

I go to a dr that takes a very progressive integrated approach to treating his patients. He has tested for food allergies and nutritional deficiencies. Following his advice and using the diet and supplements suggested in this forum has really helped.

Have a very Happy New Year!

Integrative MD's are really great! I agree. :)