Newly Joined
|
|
Join Date: Nov 2018
Location: Charleston, SC
Posts: 1
|
|
Newly Joined
Join Date: Nov 2018
Location: Charleston, SC
Posts: 1
|
SFN diagnosis
Diagnosis performed at Therapath
Rt Calf 3.92 >3.8 Abnormal 3.8-4.5 Low normal
Rt Thigh 3.92 >6.2 Abnormal 6.2-6.8 Low normal
Hello everyone. I am new here. I have just been officially diagnosed with severe idiopathic small fiber neuropathy. I had the biopsy done as well and multiple of test including blood and urine test to try and find a cause. They were not able to find a cause. I have it in my feet, legs, midsection including most of the groin, hands, arms, and face. Always have tingling in those regions except my upper legs and groin I am numb. Hand and feet are the worst when it flares up. It's like I am repeatedly being stabbed with knives nonstop for the length of the flare up. The flare ups last anywhere between 10 minutes to many hours.
I have been having that feeling for years but I have also has cervical and lumbar issues which both required surgery. Had fusion of the c5-c7 and anterior/posterior fusion of the L3-S1. These did not cause the small fiber according to the doctors. I have to go for my sixth surgery in 6 years in a week and a half to get a spinal cord stimulator for the lumbar region, it does provide some help with the pain in my feet. My bladder is shot and had a cystoscopy and video urodynamic study and my bladder muscles barely function. I have to go for the trial of interstim stimulator to see if it helps. I also have to meet with the pain specialist to discuss long term for dealing with the pain. Gabapentin does not work and I get bad side effects.
Sorry for going on and on.
Thank you for listening (reading).
Dustin
|