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Old 08-15-2010, 12:04 PM
lizziebeth lizziebeth is offline
Junior Member
 
Join Date: Jul 2009
Posts: 46
10 yr Member
lizziebeth lizziebeth is offline
Junior Member
 
Join Date: Jul 2009
Posts: 46
10 yr Member
Default My experience with body-wide neuropathy, Glenn, please read

I also have body-wide sensory neuropathy. I'm 51 years old and was in good health except for hypertension which resolved after a 40 lb weight loss. I was probably in the best shape of my life-eating right, exercising consistently and managing stress well with the help of yoga when I started to develop pins/needles in my feet in the Spring of 2008 followed by tingling in my hands in 8/09. The symptoms in my hands/feet waxed and waned. I tapered off of Paxil after having taken it for 9 years in 3/09 thinking that perhaps my symptoms were Paxil related. In April of 2009 I developed tingling in my right posterior hip area. In early 7/09,I noticed tingling in my face. By 10/09, my symptoms had become body-wide, initially mostly pins/needles, tingling with some burning and cramping. My feet have progressively become more numb. My symptoms have waxed and waned and I was able to tolerate them without meds (although I've been doing numerous supplements per the great info on this board since 10/09), until 3-4 weeks ago when they greatly intensified. For several weeks prior, I began to have difficulty sleeping due to pain associated with compression of my limbs and back. This was followed by increased burning and frequent shooting pains. It was at this point that I started Neurontin which has provided some relief as I've titrated it upward. I've had no evidence of motor involvement on the 3 EMG's that I've endured (last done 1/10). Emg's have shown mild reduced SNAP's without significant change between studies-7/09,9/09 and 1/10. A skin biopsy done at only one site (my lower calf) was reported as "0". I have seen 4 neurologists, all associated with Boston teaching hospitals (including Mass General) and have had an extensive lab evaluation along with a head CT (I can't have MRI's metal orbital implant), small bowel biopsies and a fat biopsy (I had developed GI symptoms which in retrospect were stress related). The 4th neurologist , with whom I had my first visit this week, thinks that my clinical picture is consistent with an autoimmune process. She also spoke of a neuronopathy vs. mixed axonal neuropathy. She ordered an ANA and a sed rate, both of which were WNL in 7/09 and 9/09. In 7/09 I had cytoplasmic neutrophil antibodies,phospholipid antibodies, cyroglobulins, MPS and immunoglobulins, ANCA/paraneoplastic panel. In 9/09, SPEP was normal pattern, immunoglobulin quantitatively normal, negative ant-double stranded DNA antibody, negative anti-Ro, anti-La, anti-Sm and ant--RNP. I've also had negative results for all the usual/and not so usual suspects. Glenn, have the tests I've mentioned included those you mention in reference to antibodies specific to the peripheral nerves? If not, what are the specific labs I should ask for? Right now I'm scheduled for my 4th EMG on 9/10. A few weeks ago I had what appears to be transitory weakness of the left 2nd toe, so we'll be looking to R/O any early motor involvement. If there is motor involvement (or if my sed rate or ANA are significant/?ing vasculitis), a nerve biopsy will be considered- something I've been very reluctant to consent to. Glenn, any advice would be greatly appreciated. Thanks.
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