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Full body Small Fiber Neuropathy HELP!

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Old 10-06-2018, 09:45 AM   #1
Westcoast54
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Default Full body Small Fiber Neuropathy HELP!

So glad to find you all! Iím brand new to this site.

This May I woke up with ulcerative colitis and 2 weeks into my medicine treatment I developed burning palms and soles along with bubbles in my urine. Fast forward to today, I now have full body neuropathy, worst sensations being in my FACE/Head and arms/hands/feet however I am at least 30-40% numb over my entire body. It ebbs and flows with no pain (rarely burning sensations now), just a sensation of Hardening (like muscles turning to stone) that comes and goes and the numbness always remaining.

I still have bubbles in my urine (Ct dye test and scope all normal in bladder) and have now developed a roaring in my right ear that now seems to be constant! I have had head and right ear pressure issues for over a month prior and still have it. All standard bloodwork normal, Head MRI normal, urine normal. Ive been off all RX for over 2 months because I kept having severe reactions to UC meds (high BP, rashes etc.) so controlling my UC with a naturopath using supplements. Anyone wanna take a stab at What the heck this is from???? I just got skin biopsies on my leg for SFN with results coming in a week. Neuro confirmed SFN and believes itís from antibiotics (specifically Marcobid) that Iíve takien on and off since March for UTI symptoms that wouldnít go away. Found out it wasnít a UTI but overactive bladder. I also just did a blood draw for antibodies for cancer tumors. Any advice is GREATLY welcome!!!!!
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Old 10-06-2018, 10:38 AM   #2
janieg
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Welcome Westcoast54,

I can't offer any suggestions as to the cause, but your symptoms are somewhat familiar to me. On Nov. 10, 2013, I woke up with full body neuropathy.

I don't have what I would call numbness all over, but I have tingling and vibrations from head to toe. It basically feels like I have a low level electrical current running throughout my body. My feet and lower legs are the worst, but I also feel it strongly in my face, scalp, and my temples. The three small toes on my right foot, however, have a somewhat numb feeling, though. When I flare, I feel burning, but most days, it's just annoying. I also have some weird things with my hearing on occasion. It's not constant, but I'll occasionally have what has to be tinnitus. It seems to hit me more in the evening when my other neuropathy symptoms are likely to worsen.

No antibiotics were involved before my onset, but I did incur a major insult to my gut with iron supplements that I took due to a ferritin level in the single digits. I immediately developed neuro symptoms in my head during that, but the neuropathy didn't set in for another three months. I don't know for fact that the two things are related, but it's certainly suspicious to me.

I've had a jillion tests in the past five years, and the only abnormal result is with my brain MRI where I have a couple of areas of "abnormally signalling" that are non-specific.

The only advice I have for you is to prepare yourself for possibly never learning the cause, and possibly living with it from here on out. Do what you can to protect your nerves....take a high quality fish oil supplement and make sure you don't have spiking glucose when you eat carbs. (A1c doesn't tell you this.)

Sorry you find yourself here, but welcome.

Janie

Wish I had more for you, but
__________________
Idiopathic, Full Body, Small Fiber Neuropathy since 11/2013. Symptoms include altered sensation in toes; constant tingling/vibrations in feet and lower legs; intermittent tingling in temples, scalp and face; full body "buzzing" in the morning; referred sensation in feet cause by touch; occasional bouts with severe cramping in my feet and legs; when flaring, full body burning.

Metabolic issues: FBG -88 A1C - 5.1 with glucose spikes near 300, can't metabolize alcohol, high LDL.

Current treatments:
  • Omega 3's - Fish Oil (2400 mg EPA, 1200mg DHA), 200 mg Magnesium Threonate, NAD+
  • 5 mg Meribin Biotin for low-normal biotinidase levels.
  • Low carb "back to the farm" diet, lots of water
  • Quell TENS unit, 5% lidocaine patches, magnesium cream, CBD oil
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Old 10-06-2018, 12:07 PM   #3
Westcoast54
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Quote:
Originally Posted by janieg View Post
Welcome Westcoast54,

I can't offer any suggestions as to the cause, but your symptoms are somewhat familiar to me. On Nov. 10, 2013, I woke up with full body neuropathy.

I don't have what I would call numbness all over, but I have tingling and vibrations from head to toe. It basically feels like I have a low level electrical current running throughout my body. My feet and lower legs are the worst, but I also feel it strongly in my face, scalp, and my temples. The three small toes on my right foot, however, have a somewhat numb feeling, though. When I flare, I feel burning, but most days, it's just annoying. I also have some weird things with my hearing on occasion. It's not constant, but I'll occasionally have what has to be tinnitus. It seems to hit me more in the evening when my other neuropathy symptoms are likely to worsen.

No antibiotics were involved before my onset, but I did incur a major insult to my gut with iron supplements that I took due to a ferritin level in the single digits. I immediately developed neuro symptoms in my head during that, but the neuropathy didn't set in for another three months. I don't know for fact that the two things are related, but it's certainly suspicious to me.

I've had a jillion tests in the past five years, and the only abnormal result is with my brain MRI where I have a couple of areas of "abnormally signalling" that are non-specific.

The only advice I have for you is to prepare yourself for possibly never learning the cause, and possibly living with it from here on out. Do what you can to protect your nerves....take a high quality fish oil supplement and make sure you don't have spiking glucose when you eat carbs. (A1c doesn't tell you this.)

Sorry you find yourself here, but welcome.

Janie

Wish I had more for you, but
Thank you SO MUCH for your reply! Wow, woke up with it????? That is crazy! I thought mine was fast! I can live with it, if it doesnít get much worse! I have to be able to work..walk..dress etc. and numbness can inhibit those abilities. Iím early into it and my doc thinks I will regrow my small fiber roots eventually, but has no idea when I will stop getting worse and start getting better. However, if there is a root cause that isnít a toxin, then it could very well be some kind of autoimmune disorder since I already have 3! I canít take any RX drugs related to that since my body fights everyone of them (but for prednisone and the one Iíve taken for years for Graves). Iím also terrified of the cancer tumor antibodies test results! The only one that fits my symptoms is small cell lung cancer (also breast or ovarian cancer, but already came clean on those from mammogram and pap/ultrasound/CA125 test). If I donít have lung cancer, then itís toxins or unknown like yours. Macrobid is #1 for neuropathy that is toxic drug induced if you havenít had chemo drugs..which I havenít (according to my Neuro).
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