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@wsteckline That is a very good question. I tried for 6 months where I live to get help and I got none. So I went out of state. I saw a neuro-opthalmologist and she pushed on the right side of my neck asked me if it was tender. It was somewhat. Then my diagnosis was occipital neuralgia. So I found a neuro-opthalmologist much closer to home and I went to see her so I could be followed. She does not think I have Occipital Neuralgia. I don't either now. When you look at the symptoms of it I haven't had what is written. She asked me if it was okay if I was referred to a Neurosurgeon and I said yes. I know it will take awhile to see one. I do know this is very frustrating to not get what is needed. I always read about things I have been diagnosed with. Before I went to see this Dr. I again read about Occipital Neuralgia and I don't believe I have it either. I do have Small Nerve Fiber and was diagnosed in 2021 with it. I woke up with full onset of paresthesia (which is pin pricks) from head to toe and in my eyes going off 24-7. It took three months to get an appt with a neurologist and I asked him how many of his patients had the same exact things I did. He said none its rare. So they took 20 tubes of blood and found no cause. So they did the skin biopsy and found the Small Nerve Fiber. So I have been taking Alpha-Lipoic Acid and It stopped the 24-7 but I still get them but not like in the beginning. I know I am repeating things here that I have said prior. In February of this year I had head pressure and blurry vision and it scared the daylights out of me. I went to the hospital and they scanned me and found nothing. They put me in the hospital for two nights on a stroke protocol. I had a Neurologist come into my room and didn't introduce himself and he said, "For lack of a better term we will call this a TIA." Transient Ischemic Attack. I did not have that and he labeled me. So when I went home it took me a bit to come back to myself. Then a Dr. came in that I used to have to call when I worked and he said, "You need to get your blood pressure under control." I didn't say a word. I called my husband and wrote down my blood pressures and when he came back I handed him the paper. He said, "OH". That was the end of that. He must have seen what other Doctors wrote about my blood pressures and copied it. Doctors I went to were blaming my problems on my blood pressure and that was not right. I see my cardiologist and I know how to take care of my blood pressure. I won't say, "I know how you feel." Because only you know that. But I understand where you are coming from. The medical field right now is not good. I am not saying all Doctors are bad. It is difficult to get answers how well I know. I will see a Neurosurgeon in an appt. It might take awhile I am sure. I got tired of seeing Doctors after the hospital visit because I didn't get help at all. So I took the advice of my sister and went to Houston Texas after I looked up Doctors there. There are some really good hospitals and Doctors there. Then there is Mayo-Clinic. I didn't know that there were Neuro-opthalmologists. I went to the Neurologist that diagnosed me with SNF and he should have been able to diagnose what I had but didn't. I basically researched Hospitals and Doctors. I see that there are hospitals that have programs for FND. I basically got tired of seeing Doctors where I lived so I looked elsewhere. I am not done in my quest. What helped me to move forward is the fact that I needed help and I got tired of what I was hearing. I wish you good luck in finding help. @rnlorena

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Replies to "@wsteckline That is a very good question. I tried for 6 months where I live to..."

@rnlorena Hello there,
Thank you for sharing your journey! I too have experienced similar symptoms! I have burning sensations throughout my body but mostly my head and my legs. I was diagnosed with Small Fiber Neuropathy in 2023 but the treatments I have tried have not helped with the burning. I live in West Houston as well and am wondering if you can share the names of doctors you’ve seen who have helped in some ways. I’ve seen many different doctors, some nicer than others, but no one has been able to successfully treat my symptoms! I pray you find some relief as well!