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Small Nerve Fiber Neuropathy (Idiopathic) EYE ISSUES
Brain & Nervous System | Last Active: Oct 26, 2025 | Replies (26)Comment receiving replies
@fluegelb
Thank you for your reply but I did finally get help. I was diagnosed with Small Nerve Fiber Neuropathy non length dependent in 2021. I woke up two days after I retired and I had pin pricks from head to toe and in my eyes going off 24/7. It took three months to see a neurologist and I finally got diagnosed. I live in the panhandle of Florida but I spent 6 months here looking for help with the head pressure that I had daily and got absolutely no where. I finally advocated for myself. This is what I did. I had family that lived in Houston and I have been there many times to visit. My sister told me about the Hospitals and the Doctors that they had. So I started looking at Doctors in Houston. I went to my neurologist that diagnosed me with Small Nerve Fiber Neuropathy and he didn't help me at all. I looked at Neurologists in Houston and I was surprised to see a Neuro-Opthalmologist. I had never heard of that. I was having head pressure every day not a headache. And I also had intermittent head pains. Then I noticed a weird feeling come near my right eye and It took me a bit to come up with a term for it. I called it a subtle feeling. Then a bit later it came near my left eye. Then it was surrounding my eyes. I gave up looking here where I lived and when I looked at Houston I found two Doctors. I saw a Neurologist who specialized in headaches so I got an appt with him. I next found the Neuro-Opthalmologist and I actually told the office person how much I needed to see this Dr. ASAP. I went to Houston and I was out shopping with my brother and I got a call and I saw the Neurologist in the am and the Neuro-Opthalmologist in the afternoon. Boy was she great. She diagnosed me with Occipital Neuralgia and I have dry eyes. I looked it up and the Small Nerve Fiber can cause Occipital Neuralgia. @fluegelb I will make a suggestion to you. I don't know where you live but I would suggest trying a Neuro-Opthalmologist. You can always tell them your diagnosis and see if they can help you. I know they have one in Mobile Alabama and I got an appt. with her December 1st. I did drive 1100 miles round trip to Houston but I have done it many times to visit with my siblings. So it was no big deal and it was so worth every mile. I will tell you that what I had did a number on me when I couldn't get help. It took me awhile to come back from the months I spent trying to find out what was wrong with me. I sincerely hope you find someone to help you. If you get help I would sure love to hear how you made out. @rnlorena
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@rnlorena I am glad you were able to get the answers you needed. I thought that was the case given what I was reading about on the NIH website. I live in Missouri and have unknowingly had nld-sfn since childhood. The science has come a long way since long covid has increased the number of individuals diagnosed with sfn. Your story is so beneficial to so many and I appreciate it. I just wanted to add my situation to it do to the length of time I have been dealing with it along with the possibility it could be linked to sfn. I would like to add that in my situation it is the visual acuity that is the problem. When in an eye exam, I am tested and it shows that my eyes utilize a certain power of contact.... but when I get home and wear them, I have trouble seeing. I have also had dry eye along with dry mouth and I can only wear daily contacts, so this removes the possibility of protein buildup on them. I have been my own advocate as well and understand the difficulty finding medical professionals that have knowledge of this. I was doing research when I came across your post and again, I am grateful to you for posting your dilemma and conclusion. I just want anyone going through something similar to understand that it may not be a life-threatening situation since I have been dealing with it for a very long time and it could be due to sfn. The NIH does have articles published as recently as 2020 that talk about the link between sfn and eye problems so anyone who is in need of proven scientific data can start there. Thank you for sharing.