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!

for storage and utilization of B12.

Have you had serum levels drawn for this vitamin?

Any level below 500 should be treated (doctors continue to
dismiss levels lower than that here in US as "normal"..which they are not.)

A MMA test can also show if you are absorbing and utilizing B12 correctly.

The liver also activates B6 pyridoxine. An activated form is available for this too...it is called P5P.

There is an RX vitamin with 3 activated B's in it...you might want to ask your doctor for it. Metanx
methylcobalamin (activated B12)
P5P--(activated B6)
methylfolate (activated folic acid)

I would look to this possiblity first, since it is most likely.

Many drugs can be serious depleters of nutrients as well.
If you want to PM your drug list to me, I'll look that up for you.
Also some of the anti-rejection drugs you use, may be causing this.

Thank you for your response... I've been checked for all sorts of vitamin deficiencies... 24-hour urine collection, blood tests, etc.

I actually read something in another thread on this board which caused me to do some more research and I'm now 99% sure I have sjogren's syndrome. I have extreme dry eyes and dry mouth, joint pain, and the neurological symptoms, plus the disease is common in people with my liver disease.

I sat there reading through a forum for people with neurological symptoms and I was actually crying... After more than 10 years I finally know what's wrong with me, and that there's other people out there just like me!

So thank you to this message board for pointing me in the right direction! I'm more grateful than you'll ever know!