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Old 03-24-2014, 06:32 PM #1
evandtwins evandtwins is offline
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Join Date: Mar 2013
Location: San Diego
Posts: 17
10 yr Member
evandtwins evandtwins is offline
Junior Member
 
Join Date: Mar 2013
Location: San Diego
Posts: 17
10 yr Member
Default What might account for such a dramatic change in my PN 18 years later?

I have had PN since January 1994. Fast forward to 2012, and out of the blue my sensory neuropathy goes from manageable to off the charts painful, with a dramatic increase in fasciculation.

What might cause my course to take such a dramatic turn so much later? The only thing I can think of is stress, which makes it markedly worse.

Should I be demanding a thorough workup again after all these years? Any new diagnostics available now that were not available then?

I did have a skin biopsy last year that showed reduced nerve density (as I expected).

All tests negative in 1994 except for:
  • Elevated spinal fluid protein (92)
    • Elevated CSF IgG and Albumin
    • Elevated CSF synthesis rate
    • Serum immunoelectrophoresis notable for modest polyclonal increase in immunoglobulins
    • One oligoclonal band (within normal limits?)

Does the one oligoclonal band in the CSF mean anything?

Has anyone had success with a spinal pain pump?

I just don't know how much longer I can carry on suffering like this. Please offer an opinion on where I go medically.

Thanks in advance for sharing your viewpoint
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Old 03-25-2014, 06:34 AM #2
glenntaj glenntaj is offline
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Join Date: Aug 2006
Location: Queens, NY
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glenntaj glenntaj is offline
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Join Date: Aug 2006
Location: Queens, NY
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Default If you haven't had a full work-up--

--in a long time, it might behoove you to get one with the increased symptoms. There's no rule that these conditions must remain static or progress only slowly. It's also possible that something new might have happened that is exacerbating the neuropathy.

Many of us use the Liz Jane spreadsheets as well as the Quest/Latov serological test article as starting points for our work-ups:

www.lizajane.org

http://www.questdiagnostics.com/test...ripheralNeurop

One thing I would suggest, if you've never had this done before, since you mentioned the protein in spinal fluid and the polycolonal increase in immunoglobulins from that serum protein electrophoresis: try to have the more specific and exacting immunofixation electrophoresis of serum and urine done (this is on the Latov/Quest list) to look for monoclonal antibodies (M-proteins) which are certainly associated with neuropathies. The serum protein electrophoresis is not specific enough as a small elevation in gamma globulins can be obscured in that test.
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