I have been lurking for a few months and have leardned a great deal. Its been about 8 months since I had my first symptoms in my feet. I do not have diabetics or any other systemic disease that I am aware of yet. I've had lots of testing including skin punch which was positive for small fiber and R-R which was also positive, EMG were negative last summer. All the extensive blood work including 3 hour glucose is negative. I have even had my well water tested.
I have gone from a little tingling in my feet last summer to pain, numbness, ice cold feet and fingertips, swelling, tingling on my lips,face pain,sudden sweating lasting a few minutes and then gone. I am completely intolerant in even 75 degree heat, it makes me feel so sick I am also rarely dropping things. Can't sleep from the pain now in arms and legs.I also have just started have some problems swallowing, the doc. didn't believe that one was related but I have found it in some research articles.
I live in a town where almost every neurologist work in this one enormous practice maybe 18 doctors and full range of testing and services.
My doctor is so busy that it can take three months to get in to see him even as a existing patient. He is also at a loss as to what is happening to me . He is well respected neurologist but not a PN specialist. I finally saw him yesterday and pushed him as to what he thought was happening to me, why this was progressing so rapidly and for a prognosis. So he referred me to the MAYO CLINIC.
I impulsively said ok but my insurance won't pay for it. I live in North Carolina.
I am at a loss ,at finding a PN doctor, at what is happening to my body, scared of the future. I live in the country and most everything I love in life is being outside and physical. Of course i love my family otherwise...
The drugs they have given me don't help at all and make me very tired and stupid.Neurotin, lyrica are awful for me and of course the doc is aggravated by that.
I am in health care field so if I am lost I don't know how most people deal with this "system".
Does anyone have suggestions for PN doctor in NC or a clinic closer than MAyo.
I was also referred to the clinic at UNC last Fall but they have a 10 month waiting list . I was never given a appointment . The physician there has been ill so things are very backed up.
All advice greatly appreciated.