Originally Posted by janieg

Hi Liz,

Welcome to the forum, but sorry you find yourself here. It's not as active as it once was as I think many of us long-time sufferers have just begrudgingly accepted our fate.

Like you, I had a sudden onset five years ago and am "idiopathic." I've had every test under the sun run, most multiple times.

Be it coincidence or not, right after my neuropathy started, I underwent unexplained weight GAIN. Twenty pounds poured on in a flash, and I also developed hypoglycemia. I had to carry around glucose tablets all the time. Long story short, a self-funded genetic test turned up a mutation that I thought might be involved in that. Even though I'm just a carrier of this mutation (the disorder is "Biotinidase Deficiency), when I started supplementing with biotin, my hypoglycemia went away (and the 20 pounds melted off). Unfortunately, it wasn't the solution for my neuropathy that I hoped. My next door neighbor, a retired gyn, is the only doctor who has ventured to say that perhaps living with lower levels of this enzyme for a half-century may have caused nervous system damage, and I've just stopped the process now. My doctors will say nothing about it, nor would the world's foremost expert on the subject comment. He said he's just focused on the full-blown disorder, and had no data on those of us with just clinically low-normal levels of the enzyme.

I tell you all this just because I apparently have metabolic issues that became symptomatic at the same time I developed the neuropathic symptoms. As I was 50 at the time, hormonal changes were taking place as well. Who knows if they played a role in the mess, and you mentioned your problems started after a pregnancy.

The fever you have is worrisome. When you say you were tested for Lyme, did you got to a Lyme Literate Doctor (LLD), or did you just get the standard test? If the latter, you might want to try an LLD for a full work-up. Insurance usually won't cover it, though. Here's where you can find one in your area:

...

Have you taken any genetic tests, even just the ones for ancestry/genealogy? You can get some medical results for those by uploading the raw data to another website. You never know, you might spot something. That's how I discovered my biotinidase issue. If you haven't taken one, you might want to consider the 23andme health test. Or if money isn't an issue, a full exome test like the one offered by Genos - Own your DNA, Learn about Yourself, Drive Research.

Jane