Author Topic: Small fiber neuropathy  (Read 4829 times)

toril

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  • Posts: 4
  • Reason for joining: I have not got the diagnosis. But I have many symptoms, and amyloidosis is suspected. I started to have symptoms 3 years ago. I am norwegian. I have been to NAC for a Sap-scan last february. I really appriciate to be a member of this group.
Small fiber neuropathy
« on: February 26, 2015, 08:45:29 am »
I have had neuropathy for 3 years now. I still dont know if it is because of amyloidosis. I havent got the diagnose. My neurologist has ordered EMG, thermotest, skin biopsi and nerve biopsy. I will go to the hospital in april and the biopsy will be sent to NAC. I Wonder if some of you have experience With nerve biopsy?

I also take cymbalta for the nerve pain, biut it doesnt help much.

I saw a post here describing terrible pain in the left arm. I have exactly the same. And it is worst in the night.

I have also sent bloodwork to NAC, waiting for results soon.

Wish you all a Nice day!

patpinchin

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  • Posts: 603
  • AL - extensive in skin. mouth + palatal nerves '04
Re: Small fiber neuropathy
« Reply #1 on: February 26, 2015, 09:57:36 am »
Hi Toril,

I have had excruciating neuropathy in the mouth for 13 years with inadequate symtom control.
I have been taking Pregabalin which really did not help much but was better than nothing. Recently I have been seeing a Chronic Pain specialist. He told me that often a low dose of a combination of drugs works better than a high dose of a higher single dose of one drug. He said the "classic" modern treatment for neuropathy is Pregabalin and Duloxetine (Cymbalta). Duloxetine makes my nerve aggravation worse, so I cannot take it. He then prescribed Oxcarbazepine (Trileptal) to be taken in combination with Pregabalin. Whilst not miraculous, this is helping more than anything I have previously tried. This lecture with slides is particularly useful and the question and answer section at the end is very helpful.
Managing Peripheral Neuropathy https://www.youtube.com/watch?v=v_cqb1LGREs
Pat