I'm beginning to get frustrated. Back in May/June I had my B12 tested at my request when I had an instance of being off balance. After doing some research, I learned that I may have been B12 deficient for 5-6 years. That's how far back I have had unexplained symptoms that specialists could never explain to me, like a burning mouth. Anyway, my numbers were around 163. After about 5-6 months of injections, I am up to 505. Still too low. In the meantime, I have developed severe back pain and vibrations down one left, numbness in leg & hands, tingling, pins & needles, etc. I went to a neuro who has done an EMG, lumbar MRI and both came back fine. This was followed by a brain MRI & cervical neck MRI. Brain showed lesions and a possible lesion in the bottom of the cervical MRI. Now I am going to have another cervical MRI along with a thoracic MRI with contrast. I was also referred to a neuro-opth to have my eyes checked and a spinal tap is on the table but pending results of MRI.

Here's where my frustration comes in. I still don't know why I am in so much pain with my back, I was told on the MS forum that lesions don't usually cause pain. I am hoping this new MRI will shed more light. More frustrating is that the neuro doc blew me off when he suggested MS and I pointed out the B12 deficiency can mimic MS. This is the 2nd Dr. to brush off the idea of B12 causing these symptoms. If it weren't for the back pain I would just stick with getting my levels up with my family dr and hope that the symptoms would get better over time. My question is, how on earth do you locate a neuro for this? I am sticking with this practice because I want to get all of the testing out of the way and hope that maybe they will find something but if they decide to just diagnose me with MS, what do I do then? I know there are MS specialists out there, is it possible they would be more up to date on B12 studies & take this more seriously into consideration? Or is it just a crap shoot and I have to keep rolling the dice until I find one who understands?

Thanks for the help. I feel like I am in no man's land right now. I don't really fall into spinal disorders or MS yet & there's not much out there for B12 deficiency.

Stephanie