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Old 11-04-2009, 08:09 PM #1
flyfishobie flyfishobie is offline
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Join Date: Oct 2009
Location: Dallas, Tx
Posts: 19
10 yr Member
flyfishobie flyfishobie is offline
Junior Member
 
Join Date: Oct 2009
Location: Dallas, Tx
Posts: 19
10 yr Member
Default Are there any success stories

I mentioned in my first post that I have sensory pn that began in my left big toe and then right and has slowly moved up to my lower calves within the last 8 years. I am now beginning to experience sensitivity loss in my finger tips. I have never experienced pain other than tingling and all emg and nerve conduction studies have showed no motor nerve involvement. My feet are virtually dead to the touch, but my walking is pretty good. I have been to Jack Miller Center for PN, UTexas med. school, two dallas neuro. and Ira Chang, M.D ,a neurologist in the Denver area. (By far, the most thorough of them all)

I have had pretty much all of the blood tests, a lumbar puncture, urinalysis, urodynamic testing, MRI, CT scan, evoked response studies, CTM genetic testing, myelogram, IvIg, and, whew, I know there must be something else. MRI revealed a bone spur at C6 protruding into spinal fluid, but evoked response studies revealed no conduction problems. Protein elevated slightly in lumbar puncture (59%). IvIg did not help. Serum protein electrophoresis showed a polyclonal increase in immunoglobulins consistent with active, chronic inflammation.

I have lead in me from a gunshot wound 45 years ago, but heavy metal testing was negative.

I have been on gabapinten for six years and was recently started on a regiment of prednisone 10 mg every other day. My diagnoses have ranged from idiopathic axonal sensory pn to CIDP.

I, like so many of you, don't know what the heck I really have and don't hold out a lot of hope of finding out. But, just so I can keep plugging away at it, are there any success stories out there? Also, are there any new trails that I should pursue. I would appreciate any suggestions and would sure enjoy any stories with happy endings. Jim
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