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Small Fiber Idiopathic Neuropathy

  My wife has been diagnosed with Small Fiber Idiopathic Neuropathy by Barnes Jewish Hospital and Mayo Clinic.She experiences constant burning throughout her entire body but especially her extremities such as her legs and feet/hands.She currently takes nortriptilene and neurontin for the condition.She has had several extreme flare-ups the past few months and the condition seems to be worsening.After having a recent surgery on her hand a nerve was removed for a biopsy and the results were extreme chronic inflamation.She has experienced severe swelling over her entire body and the flareups have now escalated to the point that her whole body burns in excrutiating pain.We are currently using a Neurologist that is dedicating an unbelievable amount of his personal time in helping us.At this point,due to the severe swelling and fluid retention she is experiencing,he is of the opinion that basically all of the nerves in her body are severely inflamed due to the unusual severity of her current flare up.In addition the biopsy of the nerve from her hand tends to reinforce this possibility.Based upon these facts we are considering a Plasma Exchange based upon the appearance of an autoimmune problem.My question is does this seem like an idea worth trying.It seems we have run out of options and all other testing and consults have given us no direction or course of action other than mecication trials which we have already been through with no results.Any ideas would be sincerely appreciated.
Dear Mike:
Sensory neuropathy can have diverse causes. Various forms of therapy (specifically plasma exchange, Intravenous immunoglobulin, prednisone, and/or cyclophosphamide) may be individually appropriate for specific forms of such neuropathy, specially if nerve biopsy was abnormal with evidence of inflammation. I cannot comment on the value or efficacy of any specific course of action in your wife's case without having the opportunity of going over all her records and evaluating her clinically.
The Mayo Clinic is one of the world's best centers for the diagnosis of peripheral neuropathies. In case it is practical for your wife to return to the Mayo Clinic, I am sure they could provide her and you with the best possible advice. In case Cleveland is an option, we would be most happy to contribute to her care. The neuromuscular specialists that she may want to see at the Cleveland Clinic are Drs. Mitsumoto, Shields, or Levin.
Good luck!

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