My story of undiagnosed nerve damage
 

So I experienced burning in my left thigh and numbness in my right foot since 10 months ago. During this period I was feeling it just like a discomfort. Went to neurologist and had some tests, MRI, emg, blood tests for infections, B vitamins. Everything came back normal. About a month ago I had a big flare, tingling in body, legs , arms, face, eyes tongue teeth... everything was tingling and burning. Went again to several doctors, had brain MRI, which looked normal. So as a final test I had a lumbar puncture a few days ago, which left me with a severe back pain and leg pain, in addition after this now I experience burning in my right inner thigh, good luck walking and driving for me without pain now.

I know here people are not doctors but being hopeless with them, I wonder if any of you finds themselves in my situation with similar progression of symptoms and found something. I'm open to advices.


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A few of us here have been diagnosed with pretty severe nerve damage with all of the tests you've mentioned also coming back normal. There are biopsies they can take from deep in the skin that will determine if you have small fiber neuropathy which comes with all of your symptoms. Have you also been checked for autoimmune disease?

Vitamin B12 Deficiency - American Family Physician

This link which is for doctor's to learn new medical information, explains how the new low for B12 should be 400pg/ml.

Many labs still report lower than 400 as "normal" and doctors
tell patients they are normal for B12 and hence the damage continues and patients decline.

This is very common, low B12...so it is important to find out your exact test result.

There are over 100 causes of neuropathy, so finding out what is causing yours may be important, because you could avoid something toxic to you and then enhance healing up with some supplements.

Some drugs that doctors give patients (statins for cholesterol lowering and fluoroquinolone antibiotics like cipro and others)
can damage nerves too. Virus infections, and vaccines can be triggers as well.

How old are you? What was going on before your first attack?
Do you do extreme sports or gym routines? Nerve compressions in the spine can give neuropathy symptoms. Are you exposed to solvents? The list can go on and on.

To get answers you have to tell us more details. Sometimes it is diet (pre-diabetes, gluten sensitivity) are possible triggers.

I'm don't have an official neuropathy dx and just got some tingling burning since hip replacement in 2010, thigh for sure, and then recently the right foot which is arthritic, so toes tingle and heal of foot. Recently and for a couple nights when I go to sleep I would get arm tingling (right side), some face (right side) but tried not to get alarmed and got to sleep. This tingling is primarily on right side of body where hip was replaced in 2010. I ended up with some pretty significant nerve damage from hip job so can only believe it's all surgery related for me. I was given the Fibro dx in 1999 and never had this tingling with this dx. Those Nerves...I'm much older than most here. I'm not going to go to doctors to "try" to find answers, they are all guessing too. I have some nerve supplements I take so continue with them. B vitamins are important.

My b12 levels were a bit above average, I take supplements anyway (milgama). I'm 28 years old, I didnt find a pattern for my symptoms yet, now I try to avoid sugar and meat. I take daily omega 3, milgamma and ALA. Oh and once a week vitamin D (50 000)since a was severely deficient.
I don't/didn't practice extreme sports, my diet before this happened was pretty bad lots of fats and sodas.
My glucose levels were 106, reference 70-100, hemoglobin HbA1c 5.8, reference 4-5.6 normal, 5.6-6.4 diabetes risk, >6.5 diabetes. A bit high but within normal I was told.
I've been tested for lyme and some regular STDs.
As for autoimmune I had ANA test, this is the only one I know since I have minimum information and knowledge. My spine is fine I had MRIs at all spine, just a slight protrusion in lumbar area l4-l5 and l5-s1.
Currently I'm waiting for CSF test results, not expecting much.
I'm sorry if I'm not making to much sense, this situation and medical terms are far out of my league but I'm trying to catch-up.


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