Hello everyone,

I've been watching these boards for years & knew I had stuff going on - I just wasn't diagnosed with anything yet. Over the past couple of years I have been going to Mass General Hospital in Boston, MA, seeing a highly renowned pain researcher there. She has diagnosed me with small fiber polyneuropathy. At first, my skin biopsy results came back just above the fifth percentile, then the second time around they came in lower, and now this third time my numbers indicate only 35 (units) per mm - which Is below the 1st percentile. I also had skin samples sent to Cornell for study about whether or not there was an autoimmune disease indicated. Apparently I have the indicators for this also. I have believed for many years that there has been something going wrong with my body - now I finally have proof.

My concern is the speed of progression of my neuropathy, and I am now scheduled to see a rheumatologist for the first time since my diagnosis. Does anybody have a list of questions that would be appropriate for me to bring to this Rheumy?

Most recently I read "The Spoon Theory", written by Christine M - it has helped me immensely in feeling a little more in control of my life & how much I pace myself. I have felt so guilty for so many years because I had no way to really verbalize the way my body has been betraying me - sometimes having energy to do certain things but not others, then having absolutely no energy for days on end. The sheer amounts of pain I have had to tolerate has left me exhausted halfway through most days. Things I used to do so easily, like yard work and shoveling are so difficult now. At least now I can explain to my kids and family about the number of spoons I use up every day. I highly recommend this theory.

Thanks for listening.