So I couldn't get in with Dr Roos. He sent me back to general neurology, which I was very disappointed about. I was able to get an appointment last thursday with a neurologist. Luckily, I didn't have high expectations since I thought it was Dr Roos who I should've been seeing. They explained that Dr Roos specializes in MS, ALS and loss of sensation. I have PN but all hypersensitivity with tingling and burning and no loss of sensation. The internist and neurologist at U of Chicago were nice but said the same thing I have heard many times now which is my symptoms are not "worrying" because they can see no obvious cause (I have no abnormalities in my bloodwork, EMG/NCV and MRIs) and my symptoms do not coincide with any specific conditions, other than PN.

I been told by my podiatrist, psychiatrist and primary care to keep looking, there has to be a cause but when you go to the experts they tell you it's about pain management. It's hard to get both kinds of responses because on the one hand, I need the hope that something can be done or figured out because I agree, how can you be very active and healthy and at 32 suddenly have all this pain? But then the hope gets dashed every time in a less than sensitive way by the neurologists:

"You're lucky the gabapentin is helping"
"It doesn't sound like it's progressing" after I've just described how it is
"Why are you upset?"
"Your symptoms are not worrying" - to whom??

Those responses only make sense to me now that I know my symptoms are not markers for something worse. However, they are so discouraging when given without context and further explanation.

Plus, I am convinced that neurologists know less than this forum about PN.