en bloc: My PN is exactly the same as it was in January 2010, when I had the first EMG. The variations were tiny, with a number that was 3.2 in 2010 being 3 yesterday, for example. My neurologist sat next to me and went over both exams side by side, but honestly I didn't truly know what was being tested in each field as they were compared.

I had hoped for some improvement because I had spent a year and a half taking recommended doses daily of Jarrow Formula Methyl B-12. (My B-12 was testing at over 1500 on blood tests). But there was no improvement.

When I was first diagnosed in 2009, and tested in 2010, my biggest worry was that the disease might be progressive. Since the cause hasn't been identified, I knew knew I didn't have several conditions that are known to progress, but also had no way of knowing that it would not progress.

It hasn't progressed in 3.5 years, so I don't have that concern now.

I've also learned to live with my current level of disability, for better or worse.

MRSD: My hands and arms are just fine.

We have never lived with well water. The houses we lived in for 16 years at the time this developed (PN in feet and legs) were both brand-new.

My guess is that it's all possibly related to my Primary Immune Deficiency Disorder (CVID) or to the Macrobid (Nitrofurantoin) that I took for chronic UTIs.
There are clear relationships between autoimmune conditions and neuropathies. I am one of the 25% of people with CVID who have autoimmune conditions, so I "hit the immune system jackpot" as it were.

I had developed Interstitial Cystitis (an inflammation of the lining of the bladder) in 2006 and therefore chronic UTIs (always with e-coli). The IC was diagnosed with cystoscopy in 2008.

The chronic nature of many of my infections is related to my Primary Immune Deficiency Disorder, and in my bladder to the IC, as well.

I have never taken any supplements that I didn't first check out with the NIH alternative medicine site.

My husband is a PhD Immunologist and taught and did research for 25 years at a Medical school. My younger son is also a doctor. I have an MBA, and am very leery of most alternative medicine.

I watch the fads come and go (I'm 71) and right now everyone is high on 'gluten-free' among dozens of other ideas.

As a child I tested allergic to EVERY THING EXCEPT eggs, meat, milk and peaches. Clearly I was reactive to the process of testing, IMHO. I did have severe eczema and respiratory problems, probably related to an early phase of my CVID, which wasn't diagnosed until I was 69, in 2011.

t do have some genuine allergies: Wool, lamb/sheep (meat and milk), and ragweed (including the pyrethrins in insecticides). Once upon a time everything had lanolin in it, and I had to avoid lanolin of course.

I don't know if I've been tested for Lyme disease. It is clearly a possibility as we lived for 30 years in the North East, and spent many summer in the woods in New Hampshire.

I've always been easily tired, achey, and generally not full of pep! I also used to have severe reactions to insect bites, (ants, black flies, spiders and mosquitoes) with festering sores that lasted for weeks. But that has stopped within the last 15 years or so. Why, I have no idea. Possibly because I don't spend time outside much, and we haven't lived in the NE since 1994!

My neurologist wants me to read these very technical research papers he gave me, hoping I will spot something in the writing that will give ME some ideas related to my experiences and environments.

I am having my first infusion (subcutaneous) today with a new IgG product, Gammagard 10%. If I'm not too tired I will examine the research papers this afternoon.

I've Googled everything to death, of course. In my heart I'm sure that this is not a reversible neuropathy. Something caused it in the period from 2006/7 and it was related to something that happened then, probably something I took, or ingested.

So far it's a mystery.

thanks for your attention to my situation.

Hugs, ElaineD