Small Fiber Neuropathy or Carpal Tunnel Syndrome?
So I've had weird pins & needles, numbness & tingling on and off in my hands and feet since 2022, which was diagnosed as small fiber neuropathy in 2023 when I had skin biopsies in my left leg - 3 of them.
Last summer I started a physically demanding job, and the symptoms in my hands got worse and 24/7 - fizzy feeling in fingers, and fingertips felt like they had superglue, also pain in the joints of my fingers usually in the evening. Although foot symptoms decreased. Dozens more blood tests, pee tests, brain MRI, electrodes-on-head test, sudoscan, finally an EMG showed I have ... carpal tunnel syndrome. Severe in the left hand, moderate in the right. Also sudoscan showed small fiber neuropathy in the hands but not in the feet. Meanwhile, the foot symptoms reappeared - not too bad, just disconcerting.
Neurologist recommended carpal tunnel release (surgery) and sent me to a hand surgeon. I wanted to be sure that my symptoms are from carpal tunnel syndrome, not my small fiber neuropathy, before I let somebody cut me open. So I insisted on an ultrasound, so the doctor could show me the CTS symptoms - enlarged median nerve, thickening of flexor retinaculum, edema around flexor tendons. But the hand doctor absolutely refused to look at the photos, saying the ultrasound "isn't diagnostic." (Although the NIH, and Cleveland Clinic, etc says it is diagnostic.) He wanted to try cortisone shots first, and said my response to the cortisone would indicate whether surgery would be successful. Three weeks after the cortisone shots, and no results. So I am not too enthusiastic about surgery, although if a doctor could look at my ultrasound photos and show me that I do in fact have CTS I'd give it a try.
So, does anyone know of a neurologist / radiologist / hand orthopedist / whatever who would be willing to look at my ultrasound photos and confirm whether this is CTS or SFN? My insurance is for NY but I could do a video visit out-of-pocket if there's a way to share the screen so I can see what he's pointing to on the ultrasound.
Also, what could be the cause of my Small Fiber neuropathy? Could a herniated disc have something to do with it? Could it be genetic, and could genetic testing help?
And if it's not SFN in my feet, what could it be? I asked the dr and he said, 'don't worry about it.' Huh?!?
Thanks.
Interested in more discussions like this? Go to the Neuropathy Support Group.
Just get the surgery done, it's no big deal. I've had both of my hands done a few years ago.
🙁 you have nothing to loose by waiting - getting more input from medical specialists and patient peers. I know several in your position who are very sorry they let surgeon near them. One surgery turned into multiple surgery’s with result of limited hand/finger function.
You decide and make your best treatment choice. I want only the best outcome for you! Hug…
Thank you for the responses. I don't see a point to getting the surgery if it's not likely to help, especially as I'd be out of work for a while.
Does anyone know of a neuro/hand ortho doctor or website where I could ask a question (about looking at the ultrasound photos) BEFORE scheduling a video appointment or in person visit? I don't want to pay for an appointment if the Dr is also unwilling to look at the ultrasound pics. The online doctors I found don't give the opportunity to ask question before scheduling.