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Old 10-06-2018, 09:38 AM
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janieg janieg is offline
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Join Date: Jan 2014
Location: Maryland
Posts: 792
10 yr Member
janieg janieg is offline
Member
janieg's Avatar
 
Join Date: Jan 2014
Location: Maryland
Posts: 792
10 yr Member
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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
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