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General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below. |
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Junior Member
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Hello all,
to spare you the long and gory details. I'm a formerly very healthy/active 40 year old man with no health problems at all, ate very well, etc; February 2014: abrupt onset of widespread paresthesias. 10 days later heavy/thick feeling in R arm and L arm. mild weakness in both hands. April 2014: increased weakness in both shoulders, and tremor in both arms; frequent but not constant fasciculations; sore, aching specific muscles - forearms and quadriceps, and sides of necks. July 2014: increased pain in fingers/hands/shoulders/lower back - swollen, throbbing, aching - intemrittent August 2014: urinary hesitancy September 2014: increasing painful neuropathy, paresthesias, now in abdomen, chest wall, umbilicus, and more. Every imaging study (MRI brain, cervical and LS spine with/without contrast) and electrodiagnostic study (NCS x 2, EMG x 2, SSEP) are negative. 10 pages of labs from Mayo clinic only found borderline fasting glucose 102 with normal A1C; borderline low copper 0.69 with normal ceruloplasmin; and urine ketones with no glucose or proteins. They could not make a diagnosis. My clinical exam is normal in the opinion of neurologists despite the fact that my shoulder strength is objectively reduced by 40% (last year I military pressed 135 pounds at the gym; this year it is 75 pounds). None of the symptoms have gotten better. Everything gets worse, but not slowly - rather, every month or two I'll develop a completely new symptom seemingly overnight, with no warning whatsoever. Things never get better; I just keep getting more and more symptoms. We have considered treating an unknown potential rheumatologic disorder with anti-TNF (ie, rituximab, etc) since my musculoskeletal symptoms are consistent with though not diagnostic for spondyloarthropathy (ie, psoriatic arthritis - I had a questionable psoriatic patch on my elbow at one point). however, that doesn't seem to explain the neurologic symptoms which are progressive, and frightening. I've thought about treating myself like a diabetic, just based on the borderline glucose and possibility of small fiber neuropathy (the one thing I haven't been tested for) along with presence of urinary ketones, but I don't have protein or glucose in my urine suggesting I definitely don't have glucose intolerance/prediabetes, certainly not enough to cause this degree of rapid onset neuropathy. Any bright ideas? Specifically, how can I have widespread neurologic symptoms with completely normal electrodiagnostic studies? |
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