Rn; Matty, Rose and others;
Very interesting to read this thread; I fall in the category of "undiagnosed" b-12 deficiency for a long period; long story short - since the "progression" of tremor/balance issues (I was dx'd with Essential Tremor in Nov 2005), Neuro was calling for a complete blood work up to find something that might explain why I was getting worse as I complaining my lips had gone completely numb, followed by the tip of my tongue, end of my fingers, spots on my lower legs & feet and I had major sensory symptoms in various parts of my body. Neuro said bloodwork looked "normal". I was not satisfied and went back to my PCP (Internal Medicine) with test results compaining of symptoms and my partner noticed "cognitive" problems; such as simple recall or short-term memory issues. It was my Internal Medicine doctor who noticed my b-12 levels appeared "low"; at the time 218. He requested more blood tests and b-12 level came back at 177. Clearly, my b-12 deficiency could have been discovered the previous year! when complete bloodwork was called for my my then Neuro - I have been told it takes "years" for my tissues to get so depleted. I was tested and don't have Pernicious Anemia; it's metobolic - I no longer absorb b-12 from foods.

In May 2006, I started b-12 therapy (cyanocobalamin 1ml or 10cc); one shot per week for 4 weeks; dropping to bi-weekly; then monthly; however, symptoms were worsening; doctor moved me to weekly shots of 10cc. I saw immediate results after each shot (tremendous engery!) where I'd been complaining of always feeling "tired" for over 2 years at that point. It took over six months of shots (I moved to .5ml twice a week) for the feeling to return in my fingers/toes and lips but I've got Peripheral Neuropathy caused by low b-12 for so long; we're not sure the nerves will be able to repair.

I will keep reading this forum. I see a Neuro/MDS specialist with Emory Neurology (Atlanta) now for the movement disorder, ET - and I've been included in a b-12 study that being conducted by doctor in his research group (Dr. Evatt)......I also received the book "Could It Be B-12?" written by Pacholok, R.N. & Stuart, D.O. today - so am starting to educate myself as much as possible....I want to ensure I'm getting the attention to my b-12 deficiency and it's not being ignored because doctors are more focused on the Essential Tremor disorder.....BTW, was told in latest blood test results that I now have low Vitamin "D" (17); go figure!