← Return to Idiopathic Small Fiber Neuropathy - chest pressure/tighteness

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@sphunt

So I am 68 and newly diagnosed with SFN by a telemedicine appt. I recently had with a neurologist. I am in the process of scheduling to have blood work done, and he wants to do an EMG test but after I read it does not diagnose SFN and can be very painful, I have decided against it. Apparently the many symptoms I have had for the last 15 years and longer are" classic SFN," but I either attributed them to other causes (e.g. degenerative disc disease) or I ignored them because I started to feel like a hypochondriac. After getting COVID this last January and ending up in the hospital briefly where I was diagnosed with heart valve issues I was completely unaware of, as well as developing symptoms that have not gone away, in particular, a horrific sensation of pressure on my chest and feeling like I breathe too shallow, as well as intermittent low oxygen levels (in the upper 80's) that wax and wane, all of which my cardiologist and pulmonologist told me were not related to my heart and lungs (HUH???), I decided to consult a neurologist and I am slowly piecing together that I have most likely been dealing with SFN for decades. I also believe both my mother and brother were as well but went undiagnosed. My question to you and others is, have you ever experienced low oxygen levels? It is very scary and worrisome, especially when my cardiologist and pulmonologist seem fine with it. I am looking forward to more testing and meetings with my neurologist.

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Replies to "So I am 68 and newly diagnosed with SFN by a telemedicine appt. I recently had..."

Welcome @sphunt, I've had multiple EMGs before being diagnosed with small fiber PN. I know some have mentioned they are painful and I guess we all have a little different levels of pain. I really didn't think it was that bad for any of the EMGs that I had. My Mayo neurologist used a nerve conduction test along with a physical exam to diagnose my small fiber PN but I think the most definitive test is the skin punch biopsy.

-- Diagnosing Small Fiber Neuropathy Through the Use of Skin Biopsy: https://practicalneurology.com/articles/2009-oct/PN1009_06-php

If you want to learn a little more about neuropathy, I would recommend the two following sites:
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

I can understand your concern with your intermittent low oxygen levels. Your upcoming appointments with your neurologist sounds like a good opportunity to have some questions answered. If you like to prepare for appointments and make a list of questions, you might really like the tools provided on the Patient Revolution website here -- https://patientrevolution.org/visit-tools.

Do you normally take a list of questions with you to an appointment? Can you give us an update after your appointment with your neurologist?

For me the EMG test was only slightly uncomfortable. About 20 very mild electric shocks.