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

Sorry to hear about your struggles, but thanks for sharing. I was also recently diagnosed with idiopathic SFN. I have been having bladder issues and frequent urination lately and im scheduled for urodynamic Testing and a cystoscopy. How were these tests? Painful? Do they numb or sedate you first? Were they able to detect nerve damage from the tests or only conclude that the bladder isn’t functioning properly? Any meds to help with the bladder issues?

Sorry for all the questions and good luck with everything.