small fiber neuropathy

Hello @luvnursing52, I know it can get very discouraging when you think you have a treatment that is going to work and then the symptoms come back. Hoping others dealing with similar symptoms can share their experience with you. There are quite a few members with small fiber neuropathy and I think a fair amount of them including myself probably can relate to a wonky walk. I don't have pain or headaches with my neuropathy just numbness and some tingling in my legs and feet. While you wait for members to respond, I did a search of Connect if you want to scan through the different discussions and comments.

-- Search of Connect using "small fiber neuropathy +headaches" - https://connect.mayoclinic.org/search/?search=small+fiber+neuropathy+%2Bheadaches
-- Search of Connect using "NPH" - https://connect.mayoclinic.org/search/?search=NPH++

You mentioned that initially the Certas/Codman shunt worked and now your symptoms are back. Do your doctors think that you might be dealing with more than one condition/diagnosis?

Yes, my neurosurgeon suggested to me that I'm dealing with more than one degenerative neurological problem. I have many symptoms of small fiber neuropathy for years. Finally had biopsies done on my R lower leg, which confirmed the diagnosis. I'm planning on meeting with my neurologist to discuss this again and how to move forward. Thank you for sending me these links!

@luvnursing52
Small fiber neuropathy is diagnosed with a skin punch biopsy and affects skin sensations, temperature sensations, autonomic nerve function. It wouldn’t affect walking. It sounds like you may have had a muscle biopsy and have large fiber nerve damage. Have you had a EMG/nerve conduction study of your upper and lower limbs? Have you had an MRI of your lumbar spine and hips/pelvis to see what may be contributing to your difficulty walking (spinal cord/nerve root compression)? Are you doing physical therapy?

My provider (neurosurgeon) said he felt I had more than one degenerative neurological problem. The small fiber diagnosis did come from punch biopsies of my lower leg. I have severe lumbar spinal stenosis and had a decompression surgery last year and there was no change. I should mention I am not diabetic.. I've had the EMG tests of my upper and lower extremities, twice, both negative. I have an artificial hip on the R side and my hips are fine. I've been told by the back surgeon that my gait problem is not coming from my spine. I've done PT but it's very problematic since appts are hard to get & are very brief, so I do exercise with AgeBold and other online videos. I've had these problems for years, at least 15, and I'm still not getting relief. I'm a retired RN with 50 yrs. experience, which helps me navigate what it going on. But there's more than one issue, and I'm going back to my neurologist for another consult.

@luvnursing52 A consult certainly seems in order. I think the large fibers are involved (they often follow the small fibers) and they exit the spinal column in the lumbar section. This is part of your autonomic nervous system. Have you had a lumbar MRI? Normal EMGs are consistant with SFN. The Lumbar MRI is to see if the large fibers are being pinched.

Yes, I've had a few MRI's of the lumbar spine showing severe stenosis. I had a decompression surgery last June, which had no effect on my gait. Or my pain.
I feel there's something else @ play here, despite the stenosis. I was flat out told by my spine surgeon my gait issues are NOT coming from my spine when I asked.

@luvnursing52 That certainly sounds pretty diffinative and certainly above my pay grade.
I know this is pretty frustrating for you and I hope you get answers soon. Best wishes

Thank you very much! Appreciate you!