It's been many months now that I've read with great interest, and desperation, the stories of so many people that have experienced what was previously unheard of to myself, and almost everyone else I know. I'll try my best to give the abbreviated version of what has been a physically and emotionally trying seven months.
My symptoms started this past 10-12-11, a week to the day after a flu shot and three months after a four-week bout with parvo virus. The two may have provided the "perfect storm" for what has only been hypothesized to be a "subacute, immune-mediated, non-length dependent small fiber neuropathy" that has affected me body-wide... from head to toe burning, tingling, feezing cold numbness, and deep muscle pain. I mention the flu shot and parvo virus not because they have been directly linked to my neuropathy but because they are the only two things of recent note in an otherwise healthy background. I awoke one night to severe tingling in both feet and calves that progressed to the burning, etc. and eventually over the next five months spread through my entire body, including my face and mouth. I also had the sudden onset of SEVERE gastrointestinal problems and a fifty pound weight loss that began about a month after the neurological symptoms started.
I am fortunate enough to live near a reknown teaching university and have had referrals and testing for everything imaginable (at least I think so) and there has yet to be, as with many of you, the "smoking gun" and the best the many doctors can presume is the possibility of a post-viral syndrome as described above. Testing over the last six months has included brain, spinal and cervical mri's; two sets of nerve conduction studies; skin punch biopsy; abdominal and pelvic ct's; spinal tap; endoscopy and colonoscopy; gastric emptying procedure; and many, many rounds of blood work, including a paraneoplastic panel and auto-immune panel. EVERYTHING has returned within normal limits, except the fasting blood glucose was high at 190. I have been reassured by more than one doctor that this level couldn't possibly cause a pre-diabetic sudden body-wide neuropathy. I'm tired, but thankful that I have a compassionate and BELIEVING doctor who's treated me for years and knows that something... though we don't know what... happened.
Glenntaj, "senior member", are you still around? You're the only one I have read about that comes close to what I've exprienced... this sudden total- body, ridiculously painful, scarey experience with no explanation. As my title says, I'm reaching out. And thanks so much to the "Welcome Team". Your stories are helpful on many levels. I realize that I need the support and knowledge of others who are the only ones who can fathom this experience.