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Old 03-01-2016, 09:53 PM
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ShaggyChic_1201 ShaggyChic_1201 is offline
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Join Date: Sep 2014
Location: Midwest, USA
Posts: 86
8 yr Member
ShaggyChic_1201 ShaggyChic_1201 is offline
Junior Member
ShaggyChic_1201's Avatar
 
Join Date: Sep 2014
Location: Midwest, USA
Posts: 86
8 yr Member
Default PN doesn't act that way...

I'm looking for thoughts and experience / advice, not a diagnosis.
  • Quick background - I have RSD/CRPS in right arm + spinal cord stim. In Oct, developed mild pain in left hand, plus new pain (that didn't feel the same as my usual pain) in right. Neurologist in Dec did office eval and said my toes were not producing pain signals and I had SFPN. No confirming tests, but it sounded right to me. Neurodoc started me on gabapentin.
  • In Jan, (1 month later) pain had outstripped my med routine and I called neurodoc. He said to add 300 mg of gabapentin (going to 1800). I did. I felt better.
  • In Feb (1 month later) - same thing. Pain had intensified beyond Jan. Called neurodoc who said he'd see me at the end of March (first available). Getting no advice, I figured, well if going up on gabapentin helped last month, maybe it will help again this month. Went up to 2100. It helped a tiny bit.
  • Today (2 weeks later) I saw GP who was annoyed at neurodoc and said, that's not how PN works. You see tiny changes over years, not galloping ones you're describing. In his mind there were 3 options:
1. Get cervical myleogram. No experience with this. Does it hurt?

2. Get EMG/NCT. I am vehemently opposed to this on right arm b/c my last one 10 years ago was so intensely painful I swore them off for life. Nice doc tried to apply logic to discussion, but my inner 5-year old was shouting, NO NO NO NO with her fingers in her ears. Can I be given large amounts of valium and still have a useful EMG?

3. Go to a center, like Mayo, and throw myself at their mercy. Aside from stripping me of every last dollar I may ever earn in the future, does anyone have anything positive to say about doing this?

Lastly, kind sufferers, can you address nice doc's central point that PN doesn't act this way?
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