Hi californiagirl (I wish they all could be......)

After extensive testing, and I do mean extensive, and intense review of my complete history, all possible causes of my profound neuropathy (walk only with braces and a walker) were ruled out.(diabetes, MS, brain tumor, all genetic causes, pinched nerves, heavy metal, alcohol, chemo, which I've never had, and others).

My Duke research Immunologist postulates that my Disordered (indeed, crazed) Immune System attacks my body's organs/system with a biochemical (possibly Cytokines) and has damaged my moisture system (eyes, mouth), lungs, bladder, large nerves in my legs, small fiber nerves in all of my body, ears (Meniere's), Gastro-intestinal system (swallowing disorder, IBS-D), etc. When I experience attacks they cause what is called a Flare - pain, fatigue, depression.

My husband is also a research immunologist and agrees with my Duke Doctor.

There isn't anything I can do about this attack. I have IVIG every four weeks to add IgG to my body, because I don't have enough IgG and would be constantly sick with infections of all kinds, with out these infusions. I have had IVIG for 4.5 years.

My Immune System is so bizarre that is doesn't LIKE the added IgG, so have to take low dose cortico-steriods (Medrol) so that I can have IVIG every 4 weeks without the reaction that causes Pain, Fatigue and Depression at the 48 hour mark.

The IVIG I have is not at the amount that is used to sometimes treat PN, by the way. Since my PN is profound, it is unlikely that I would be a good candidate for the high dose IVIG that is sometimes administered in the hope that it will stop and reverse the demyelination that causes PN in many cases.

By the way, I take 3600 mg of Gabapentin a DAY for relief of my SFN, which is the type that is sometimes referred to as Skin on Fire Syndrome.

Regards, ElaineD

thanks for all the answers. I don’t think that it could be alcohol related as there was only a short time in my life I was somewhat of a binge drinker but I rarely if ever drank after that.

Elaine, that sounds so scary. I definitely think mine could be auto immune related as I also have Hashimotos thyroid disease. I really need to find better specialists to get some real answers.

I’m a little relieved to hear your dose of gabapentin because I’m at 1800 just to go to sleep at night. I have the skin on fire feeling too mostly in my feet and they also get numb and feel hard. But I also have burning in my arms and hands.

Thanks for the responses.

I have severe large fiber axonal peripheral neuropathy in my feet, legs past my knees, and hands/wrists, starting to go up my arms, which is caused by a massive, long term toxic exposure. I have it for almost 17 years now. Numbness and loss of balance, difficulty walking any distance, plus diminished dexterity in my hands are my main symptoms now. I still have a broken bones feeling when standing or walking even though my feet are dead numb. It started off as numbness in my two big toes. In the past I have had more frequent burning, squeezing, shocking, throbbing sensations, though they have diminished with the increasing numbness. I take vitamins and supplements to try to slow down the progression. At this point, recovery is a moot point.

Echoes, what was the toxin (s)?

so far i have identified 152 that i was exposed to