Small nerve fiber neuropathy, severe head pressure and blurry vision

@rnlorena I have NLD SFN as well. I got sick February 2023 and I agree the healthcare system is horrible. My symptoms started with dry eyes and mouth, blurry vision, shoulder/neck/back pain, weakness left sided, off balance, numbness, tingling just to name a few. My neurologist I was using at the time for migraines and tremors wasted my time for 2.5 yrs. Finally did an EMG (shows large fibers) which was normal. Didn’t bother to do a skin biopsy. 3 different times he said my symptoms were from anxiety (it’s in my medical history). I said of course I have anxiety I’ve been sick 2.5 yrs with no answers to why. I took myself to a neuropathy doctor he did sensory testing and thermography showed I had neuropathy and 75% sensory loss in both feet. I sent him the results of that and the skin biopsy and he said nothing about either one. The nurse responded Dr saw your results. I said no response? She said no. What a sorry excuse for a Dr. He was wrong and said nothing not even I’m sorry. I didn't expect anything I only sent it to say I told you so. I found a new neurologist (stroke) told him my dr experience and he was kind enough to get his colleague to do a skin biopsy which showed NLD SFN. He referred me to neuromuscular neurologist said they could help me better. First visit she said normally SFN is unknown cause which told me she wasn’t gonna look for a cause. I was having cognitive issues she said I don’t usually do cognitive referrals so I’ll refer back to Dr that referred to me (who is stroke specialist and felt I needed diff neuro) my vision went from blurry to double then halos, bright light sensitive. I was scared of losing my vision. She just responded to my message with I’m sorry to hear your not feeling well. Before my follow up appt I asked her to fill my migraine and tremor meds as I thought she was my neurologist. She said she’d refer me back to the same dr for that, that she treated me for what he referred me for. WTH? Now I’m without a neurologist and trying to do a provider switch at the office of dr that wasted my time. I’ve had 6 Rheumatologists and not happy with current one. He did some labs that I’m always positive for but I was negative. I noticed the Rheumatoid factor was Hemolysized (meaning red blood cells had burst releasing hemoglobin and damaging the sample which will cause incorrect results). He said he’d redo the one test but not the rest that I’ve been positive for for 3 yrs. I’m a big advocate for myself, I do lots of research and request tests to be done that end up being positive like P-ANCA MPO Vasculitis positive. I had looked back in my medical records to 2020 and found I was positive and nobody ever followed up on it. I just requested multiple labs from my PC as I need answers. It is affecting my autonomic system severe GI issues, incontinence while sleeping, temp regulation (mine stays 96-97 as low as 95), orthostatic hypotension, spikes in resting heart rate. I got a referral to Autonomic Center but my appt isn’t until December 2026. There’s only 62 doctors in the country that treat it. One of them is near me. So in the meantime my PC is ordering tests I ask for that will help when I finally get to see the dr. I got her to refer me to Neuro Opthamologist as NLD SFN can affect your vision by not dilating properly letting too much light in damaging the cornea and the optic nerves. I complained to all my drs about my concern for my vision and not one said anything or put 2 and 2 together. My drs think I just have SFN I have to point out it’s NLD and very rare and affects every body part.

As for your pain in ear/face is a symptom of NLD SFN. It can affect any part of your body. I have ringing in my ears, ear/jaw pain, my lips and teeth feel numb, lower part both sides face get numb, creepy crawly tingling of my scalp. Research and advocate for yourself and push for answers. Google, Mayo, Johns Hopkins, Cleveland Clinic etc. I know way more about what I’m dealing with due to my research. Doctors haven’t told me one bit of this information. I hope you find answers.

@rnlorena I have NLD SFN as well. I got sick February 2023 and I agree the healthcare system is horrible. My symptoms started with dry eyes and mouth, blurry vision, shoulder/neck/back pain, weakness left sided, off balance, numbness, tingling just to name a few. My neurologist I was using at the time for migraines and tremors wasted my time for 2.5 yrs. Finally did an EMG (shows large fibers) which was normal. Didn’t bother to do a skin biopsy. 3 different times he said my symptoms were from anxiety (it’s in my medical history). I said of course I have anxiety I’ve been sick 2.5 yrs with no answers to why. I took myself to a neuropathy doctor he did sensory testing and thermography showed I had neuropathy and 75% sensory loss in both feet. I sent him the results of that and the skin biopsy and he said nothing about either one. The nurse responded Dr saw your results. I said no response? She said no. What a sorry excuse for a Dr. He was wrong and said nothing not even I’m sorry. I didn't expect anything I only sent it to say I told you so. I found a new neurologist (stroke) told him my dr experience and he was kind enough to get his colleague to do a skin biopsy which showed NLD SFN. He referred me to neuromuscular neurologist said they could help me better. First visit she said normally SFN is unknown cause which told me she wasn’t gonna look for a cause. I was having cognitive issues she said I don’t usually do cognitive referrals so I’ll refer back to Dr that referred to me (who is stroke specialist and felt I needed diff neuro) my vision went from blurry to double then halos, bright light sensitive. I was scared of losing my vision. She just responded to my message with I’m sorry to hear your not feeling well. Before my follow up appt I asked her to fill my migraine and tremor meds as I thought she was my neurologist. She said she’d refer me back to the same dr for that, that she treated me for what he referred me for. WTH? Now I’m without a neurologist and trying to do a provider switch at the office of dr that wasted my time. I’ve had 6 Rheumatologists and not happy with current one. He did some labs that I’m always positive for but I was negative. I noticed the Rheumatoid factor was Hemolysized (meaning red blood cells had burst releasing hemoglobin and damaging the sample which will cause incorrect results). He said he’d redo the one test but not the rest that I’ve been positive for for 3 yrs. I’m a big advocate for myself, I do lots of research and request tests to be done that end up being positive like P-ANCA MPO Vasculitis positive. I had looked back in my medical records to 2020 and found I was positive and nobody ever followed up on it. I just requested multiple labs from my PC as I need answers. It is affecting my autonomic system severe GI issues, incontinence while sleeping, temp regulation (mine stays 96-97 as low as 95), orthostatic hypotension, spikes in resting heart rate. I got a referral to Autonomic Center but my appt isn’t until December 2026. There’s only 62 doctors in the country that treat it. One of them is near me. So in the meantime my PC is ordering tests I ask for that will help when I finally get to see the dr. I got her to refer me to Neuro Opthamologist as NLD SFN can affect your vision by not dilating properly letting too much light in damaging the cornea and the optic nerves. I complained to all my drs about my concern for my vision and not one said anything or put 2 and 2 together. My drs think I just have SFN I have to point out it’s NLD and very rare and affects every body part.

As for your pain in ear/face is a symptom of NLD SFN. It can affect any part of your body. I have ringing in my ears, ear/jaw pain, my lips and teeth feel numb, lower part both sides face get numb, creepy crawly tingling of my scalp. Research and advocate for yourself and push for answers. Google, Mayo, Johns Hopkins, Cleveland Clinic etc. I know way more about what I’m dealing with due to my research. Doctors haven’t told me one bit of this information. I hope you find answers.

I have ALS, I know totally different. I too, wonder if the two covid shots affected me somehow. I have headaches when I lay on my left side at night, laying awake for many hours. I also have restless leg syndrome and leg cramps adding to little sleep. My dr suggested gabapentin. I could not take the first suggested dose, so now experimenting with lesser amounts. I am 112 lbs. so any suggested dose? Not too much so all I want to do is sleep, but enough to stop rls. I recently read about a medication for ALS, seems it's been on market a while that was never mentioned Radicava supposed to slow progress 33%! Anyone ever hear of it!???

@rhonda1965 My first reaction is OMG! I am sorry you have to wait so long for an appt. The medical field has been changing for the worst. I have seen it first hand. I like you, have been researching whatever I need to including looking up any meds they give me. I tried to get into Mayo and they turned me down. So after my Texas visit to the Neuro-Opthalmologist I looked for one closer to me which is about 90 minutes versus 550 miles one way. The one I saw on Dec. 1st doesn't think I have Occipital Neuralgia. She talked to me for quite some time and then told me that. I had already read about it but I do not have those symptoms. I get head pressure. The Doctors I have seen locally not one of them could help me and I read all my Doctors notes. They think I had headaches and they said it was my blood pressure. But I see my cardiologist and she knows about this and my blood pressure is good. I told them head pressure. The last time I had a headache I was sick and my head was pounding and nothing I could do stopped it. That was a headache and it was over 31 years ago. I haven't had one since. So the Dr. that was 90 minutes away sent a referral to a Neurosurgeon in Mobile at UAB. But I know how long it takes so I have a change in my plans. Through my Dr. I got an appt. of course its in Jan. (30 days from today) to see a Pain management doctor. That is not all they do there. The girl I spoke to on the phone gave me information to look up their website and see the various things that they do. It's not just pain management. They can burn nerves if needed. I will be READY for this visit with questions for sure. I hope you get the answers that you need. I am sorry it will take so long to see someone. @rnlorena

@rnlorena

Have you figured out any answers or relief on what’s going on with you? I’m reading your posts and started experiencing nearly identical symptoms in November and am getting no answers.

Would love to have ANYTHING to try and point my doctors in the right direction. They keep calling my head pressure “headaches” and it doesn’t feel like the same thing.

They did find cervical spondylosis, but don’t feel it’s severe. Also a brain tumor - but feel it’s not causing any symptoms.

My instinct feels like we’re experience long something messing with our nerves.

@jessicad
I read your post. Not sure if this is any help but I get pressure headaches and was diagnosed with a Meningioma. It was found incidentally after I fell and did a CT scan last December. I hope you find out what is causing this. Be well.

@rnlorena

Have you figured out any answers or relief on what’s going on with you? I’m reading your posts and started experiencing nearly identical symptoms in November and am getting no answers.

Would love to have ANYTHING to try and point my doctors in the right direction. They keep calling my head pressure “headaches” and it doesn’t feel like the same thing.

They did find cervical spondylosis, but don’t feel it’s severe. Also a brain tumor - but feel it’s not causing any symptoms.

My instinct feels like we’re experience long something messing with our nerves.