u/virghoe95

I (30 F) have been experiencing waxing and waning nerve symptoms since Dec. 2022. I have been to multiple neurologists who have the most part been useless. The original two who I saw immediately dismissed small fiber neuroapthy (SFN) as a diagnosis. I also want to mention this started after taking two back to back antibiotics, but neither are known to cause neuropathy.

So far, I have had two normal EMGs, multiple blood panels, and MRI w/ contrast. I have also been battling with SIBO and nutritional deficiencies which I was told was causing my symptoms. I had low B12 (in the low 300s), folate deficiency (2.1), and low ferritin (at an 8). I got iron infusions and started B12 injections and folate supplements and my levels are now showing a B12 of over 2000+ and a folate of 9.1. My ferritin is also in the 90s since the infusions. I haven't taken the antibiotics for SIBO yet and mainly managing it with lifestyle because I'm scared more antibiotics will make me worse.

For about a year, I had waxing and waning symptoms but was pretty functional. I had the occasional tingly sensation and annoyances but not pain. The B12 shots (1,000 mcg of hydroxy) also seemed to be helping. I saw another neurologist (Neurologist #1) who said I can do a small fiber neuropathy skin biopsy if I want to but because my symptoms are mostly in my arms and face, they might not yield positive results. I decided to continue B12 treatment and hold off on testing for now. She did seem to think the B12 was driving my symptoms.

Well, just last week, I started getting an extremely painful burning sensation in my arm. It was super sensitive to the touch and spread to my chest and other arm. It has calmed down a bit but is still there. I have never experienced true "burning" like this--feels like a horrible sunburn but won't let up. I scheduled the biopsy with Neurologist #1 which isn't until August. In the meantime, I scheduled an appointment with Neurologist #2 (who I had seen previously as well) who basically said, "Based on your symptom progression, you definitely have it. You treated the B12 and it came back, so therefore it's idiopathic. Take some cymbalta for nerve pain treatment." I obviously left in tears and feel extremely discouraged because she said a biopsy wouldn't even pick it up since my symptoms are in my arms. I am holding out until biopsy from Neurologist #1, but can this even be diagnosed like this? I was fine for a year.

I also can't help but jump to worst case scenario that my life is over and these symptoms are permanent. I also have Hashimotos, so there could be an autoimmune component but nothing has shown up on bloodwork. I admit that reading the stories of how debilitating this disease is on Reddit is making me feel worse while I wait for the testing. I don't know what to do anymore but am basically looking for insight or advice. I don't want to just believe it's idiopathic because the B12 stopped working. Has anyone has similar experiences? I did stop the shots for a few weeks but started weekly again instead of monthly. Any insight is appreciated.

I (30 F) have been experiencing waxing and waning nerve symptoms since Dec. 2022. I have been to multiple neurologists who have the most part been useless. The original two who I saw immediately dismissed small fiber neuroapthy (SFN) as a diagnosis. I also want to mention this started after taking two back to back antibiotics, but neither are known to cause neuropathy.

So far, I have had two normal EMGs, multiple blood panels, and MRI w/ contrast. I have also been battling with SIBO and nutritional deficiencies which I was told was causing my symptoms. I had low B12 (in the low 300s), folate deficiency (2.1), and low ferritin (at an 8). I got iron infusions and started B12 injections and folate supplements and my levels are now showing a B12 of over 2000+ and a folate of 9.1. My ferritin is also in the 90s since the infusions. I haven't taken the antibiotics for SIBO yet and mainly managing it with lifestyle because I'm scared more antibiotics will make me worse.

For about a year, I had waxing and waning symptoms but was pretty functional. I had the occasional tingly sensation and annoyances but not pain. The B12 shots (1,000 mcg of hydroxy) also seemed to be helping. I saw another neurologist (Neurologist #1) who said I can do a small fiber neuropathy skin biopsy if I want to but because my symptoms are mostly in my arms and face, they might not yield positive results. I decided to continue B12 treatment and hold off on testing for now. She did seem to think the B12 was driving my symptoms.

Well, just last week, I started getting an extremely painful burning sensation in my arm. It was super sensitive to the touch and spread to my chest and other arm. It has calmed down a bit but is still there. I have never experienced true "burning" like this--feels like a horrible sunburn but won't let up. I scheduled the biopsy with Neurologist #1 which isn't until August. In the meantime, I scheduled an appointment with Neurologist #2 (who I had seen previously as well) who basically said, "Based on your symptom progression, you definitely have it. You treated the B12 and it came back, so therefore it's idiopathic. Take some cymbalta for nerve pain treatment." I obviously left in tears and feel extremely discouraged because she said a biopsy wouldn't even pick it up since my symptoms are in my arms. I am holding out until biopsy from Neurologist #1, but can this even be diagnosed like this? I was fine for a year.

I also can't help but jump to worst case scenario that my life is over and these symptoms are permanent. I also have Hashimotos, so there could be an autoimmune component but nothing has shown up on bloodwork. I admit that reading the stories of how debilitating this disease is on Reddit is making me feel worse while I wait for the testing. I don't know what to do anymore but am basically looking for insight or advice. I don't want to just believe it's idiopathic because the B12 stopped working. Has anyone has similar experiences? I did stop the shots for a few weeks but started weekly again instead of monthly. Any insight is appreciated.

I (30 F) have been experiencing waxing and waning nerve symptoms since Dec. 2022. I have been to multiple neurologists who have for the most part been useless. The original two who I saw immediately dismissed SFN as a diagnosis. I also want to mention this started after taking two back to back antibiotics, but neither are known to cause neuropathy.

So far, I have had two normal EMGs, multiple blood panels, and MRI w/ contrast. I have also been battling with SIBO and nutritional deficiencies which I was told was causing my symptoms. I had low B12, folate deficiency, and low ferritin. I got iron infusions and started B12 injections and folate supplements. I haven't taken the antibiotics for SIBO yet and mainly managing it with lifestyle because I'm scared more antibiotics will make me worse.

For about the past year, I had waxing and waning symptoms but have been pretty functional. I had the occasional tingly sensation and annoyances but not pain. The B12 shots also seemed to be helping. I saw another neurologist (Neurologist #1) who said I can do a biopsy if I want to but because my symptoms are mostly in my arms and face, they might not yield positive results. I decided to continue B12 treatment and hold off on testing for now. She did seem to think the B12 was driving my symptoms.

Well, just last week, I started getting an extremely painful burning sensation in my arm. It was super sensitive to the touch and spread to my chest and other arm. It has calmed down a bit but is still there. I have never experienced true "burning" flare like this--feels like a horrible sunburn but won't let up. I scheduled the biopsy with Neurologist #1 which isn't until August. In the meantime, I scheduled an appointment with Neurologist #2 (who I had seen previously as well) who basically said, "Based on your symptom progression, you definitely have it. You treated the B12 and it came back, so therefore it's idiopathic. Take some cymbalta for nerve pain treatment." I obviously left in tears and feel extremely discouraged because she said a biopsy wouldn't even pick it up since my symptoms are in my arms. I am holding out until biopsy from Neurologist #1, but can this even be diagnosed like this? I was fine for a year.

I also can't help but jump to worst case scenario that my life is over and these symptoms are permanent. I also have Hashimotos, so there could be an autoimmune component but nothing has shown up on bloodwork. I admit that reading the stories of how debilitating this disease is on Reddit is making me feel worse while I wait for the testing. I don't know what to do anymore but am basically looking for insight or advice. I don't want to just believe it's idiopathic because the B12 stopped working.