Michael
Region: US
Friday 12 September 2025 16:44:44 GMT
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Lusy :
Mine was cauzed by gluten and once I removed gluten and traces of gluten from my diet in around a year I got better. I saw imediately in the first month I'm feeling better. I'm almost 3 yrs gluten free now. I had it for 5 years before. Gluten affects my neuro and vestibular system. I would get around 400 vertigo episodes per day from gluten. At my worst I had around 30 symptoms and was staying mostly in bed. I also had your symptoms. I assume my imune system reacts to gluten and causes the damage cause in 30-60 after eating gluten I always get symptoms. Of course I don't eat it now, but I get glutened by mistake. Just sharing my story as maybe it helps someone.
2025-10-04 08:14:05
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rickradis :
Do a three month parisite cleanse
2025-10-06 17:00:11
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Cheree W :
I have it. Tested positive from biopsies
2025-09-23 05:01:12
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Dwight Tomas :
I believe this is my problem. My pain is from the waist down. Sensation of cold,numbness, pins and needles. My worst pain seems tied to circadian rthym as it flares in late afternoon and lasts thru the nite. subsides during the day and activity seems to help for me.
2025-09-23 21:22:50
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Sudru :
Evaluating neuropathy and possible pots now from long covid. My feet are numb. Ive had lower than normal temp for four years, yet I feel like I’m burning up all the time. I went to John Hopkins Hospital decades ago for help with unrelated issue. I would go there if you need help, they are the best in Neuro. Wishing you the best.🤞💙
2025-09-21 06:38:54
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Matthew Faulk :
I’m going through exactly the same symptoms for a year now. Thanks to chat gpt I discovered I had low B1 and what turns out to be MTFHR gene. I bought a daily vitamins curated for MTFHR and have seen the most improvement from that after trying many different supplements. Within that daily vitamin is benfotamine, which is known to help with neuropathy. I’m going to Mayo in November so hope to find more answer but the daily vitamin has allowed me to get through the days more functional. I hope you find more answers too man. It’s rough.
2025-09-21 01:03:42
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Rebecca Olson :
I just got diagnosed and I also have it everywhere, plus muscle twitching and spasms sadly. No answers yet
2025-09-17 04:46:12
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Tongan :
Mine burning feet, from drinking alcohol 😥
2025-10-03 14:15:28
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kristina_ranney :
Mine is non lengthened and affects my nerves in my abdomen.. therefore gastroperestis.. along with heart rate and blood pressure issues. Good luck to you.. I’ve had it now for 10 years 😞
2025-09-26 23:48:07
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mahtava2010 :
I'm a 52 yr old woman. I've had neuropathy in both legs and feet for about 10yrs I have moderate to severe osteoarthritis in my spine so I was told it's OA cause the neuropathy. 4 yrs ago I started getting neuropathy in my hands was told it was carpal tunnel but bracing made it worse and nerve conduction test came back normal so they dismissed as OA cause nerve pain. Started seeing a new primary care and she ran blood work and found I have a rare abnormal protein in my blood. last week my hemotologist diagnosed me with MGUS. There's a good amount of info about MGUS online. Its usually not symptomatic but when it is it can cause peripheral neuropathy in hands and feet. My neurologist is going to run tests to confirm but he thinks it's SFN since my nerve conduction test came back normal. Dr's rarely check for MGUS because it is rare so you will need to be proactive and ask for the blood test if you think it fits your symptoms. Good luck guys I hope you find answers. Being able to put a name to it weirdly helps.
2025-09-17 03:35:34
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ilse :
I have permanent nerve damage in my face fr years its nonstop everyday my whole face is numb nothing helps I've been on so many meds I hv tmj in my face amd that's affecting my nerves I've done botox and it helps alot
2025-09-29 11:46:36
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michellerooney717 :
Mine is in the tops of my thighs and my buttocks..then my arms and hands
2025-10-03 13:42:06
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Vanessa :
I have this too but don’t know what’s causing it either. Everyday it’s different and it’s patchy all over my body. Hope you find answers or treatment. 🙏🏽
2025-09-26 16:27:47
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PeanutThePuggle :
I am seeing a neurologist in January. My rheumatologist has ruled out lupus and some other conditions and he thinks it might be small fiber neuropathy can I ask? Do you have any type of like muscle pain or joint pain? I have difficulty like using my hands and my body aches pretty much all the time and I didn’t know if that’s a normal symptom because I’m not quite sure it is small fiber neuropathy?
2025-09-20 17:59:26
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John Adams :
We have to make a distinction here between primary classic sfn which is length dependent and secondary sfn to autoimmune cases which is patchy and not length dependent ! Secondary sfn is like in my case is more difficult to diagnose because biopsy from one single far location dosnt reflect the real places . That’s why we are in trouble
2025-09-27 04:51:19
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Madi :) :
I wish you luck and I hope there are more answers and treatments soon <3
2025-09-19 00:11:44
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StephGBPhoto :
Oh so can SFN cause POTS? 😅
2025-09-13 22:32:01
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HeatherPRN4 :
I’m going to talk to my doctor about this
2025-09-15 02:09:58
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TheBruintjiesClan😜 :
sounds soooo much like what im going through, doctor sending me to see neurologist for brain CT, and seeing a rheumatologist in Jan next year as my ANA is positive n speckled, i sure hope n pray you find answers, as i know exactly what u speaking of.
2025-10-03 18:12:47
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Jane :
I have this too, but have not been diagnosed as yet. Since being vaxxed either covid vaxxine this has happened to me. Mine starts late afternoon, esp when the sun is out. Keeps me awake at night, have been tested for heavy metals and have arsenic overload, on a detox schedule with my doctor.
2025-09-30 03:21:24
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Jay Mo :
Did anyone else experience this after glp1 or tirzepatide use?
2025-10-03 20:26:24
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klh1234567hi :
I’m looking for answers as well. My hair hurts.
2025-09-16 04:59:26
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Female Jude :
Take vitamin B complex, B¹², magnesium bi-glycinate
2025-10-03 02:38:09
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ethereal 📚 :
I keep a log of the location, sensation, date and time and then share it with my rheumatologist. Mine is sporadic and all throughout my body.
2025-09-16 12:37:27
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mehari :
am victim small fiber neuropathy please help me
2025-10-01 07:35:45
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