[EvilRachel]

Hey everyone, I'm so excited to have discovered this forum, maybe someone here has had a similar experience to me or has some suggestions as my doctors are stumped...

I was diagnosed with an auto-immune liver disease (PBC) when I was about 15. At around 17 I started developing neuropathy in my hands and feet. It only affected my sensory nerves, not the motor nerves, and a biopsy showed that the nerves themselves were damaged, not the myelin sheath. I saw three different neurologists, but none of them could come up with any answers. They told me it was related to my liver disease but they had no idea what w as causing it or what to do about it.

The numbness stopped progressing after I had a liver transplant at age 21. It never got any better, but over the years I've managed to adapt reasonably well.

A couple of years ago I was diagnosed with recurrent PBC. Last summer (age 26) my tongue and lips went numb. It was a different sort of numbness than before, this felt like I'd been frozen at the dentist. I went to my neurologist who did some MRIs and a spinal tap. He said there was something odd showing on my brain stem but he had no idea what it was and that there was no way to tell. He said he didn't think that this numbness was related to my previous neuropathy, and that it may have been a reaction to one of my medications.

Since then the numbness and tingling have spread slowly over the entire left side of my face. Also, my mouth and eyes seem to have completely dried out. I finally convinced one of my liver drs to listen to me, and about 6 weeks ago he took me off one of my medications known to cause neurological symptoms. Over the past couple of days though the numbness has started getting worse again, now it's spread to the tip of my left ear and I think down my neck a bit.

Please, please, do any of you have any suggestions to offer me? I'm at my wit's end, and am not willing to sit back and wait to see how it progresses any longer.

Thanks for reading my super-long post!