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12100272 tn?1423540919

I have bilateral trigeminal neuropathy, but no idea what's causing it

Hi everyone!
I've asked this question once before, but since I have some more information and test results, I thought I would give it a try again.
For the past 11 months (Since January 2015) I have had numbness and hypersthesia of my face. It started as a small spot on the right side of my nose, and spread to the lower half of the right side of my face, then over to the left side, and then my forehead on both sides. From my research I know about the 3 branches of the trigeminal nerve, and clearly the top branch was the last to be impacted. As the numbness has progressed it has changed, and grown worse, especially around my mouth. It basically feels very stiff and difficult to use, like your hands after being out in the cold for a long time. It is both less sensitive, and hyper sensitive, which is hard to explain to people. The nerves fire a lot, especially around my mouth, though this has changed, because at the beginning they were firing in the rest of my face and now they don't so much. I also have numbness of the tongue, gums, and teeth, which is weird haha. No loss of function at all, and all neurological tests (strength, vision, balance) are totally normal.
I have seen neurologists at Mass General, as well as Johns Hopkins. I have had 2 MRIs, which show inflammation of the trigeminal nerve, but not the reason for it. I've also had a PET scan, a CT, an echocardiogram, and chest x-ray (to check for sarcoidosis), all of which were normal. I've had an LP, and countless blood tests.
I had very slightly elevated levels in my ACE blood test, but normal levels in my spinal fluid and a clear chest x-ray greatly lowered the likelihood of sarcoidosis.
I've had the Western Blot test run for Lyme's and it came back negative.
Nothing showing up on the MRIs that would suggest MS, tumors, etc.

Has anyone experienced anything like this? Any ideas what it could be? I do a lot of research myself, but it's kind of hard to find information, because every time I search "trigeminal neuropathy" I get results about "trigeminal neuralgia", which I'm pretty positive I don't have since I don't have any pain, and the numbness is constant.

Any information anyone could give me would be greatly appreciated!
Abby
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