Hi, I am new to this forum, but I have read posts for about 2 years now.
I actually printed your post regarding the weekly B12 injections and the response your neuro made reagarding the levels, and I showed it to my Haemotologist. I take weekly injections since May 2005. I was dx'd 12/04, but the Neuro I had at the time, did not want me to take more than monthly shots. Unfortunately, my MMA levels did not come down until 7/05 with the weekly shots. My MMA is normal now, but my B12 level sits at around 600.
The question is why???? When I found your post, I almost went through the roof, and I began to cry.
In 12/05, I noticed that I had muscle atrophy of my left thigh. I won't go into the long details, but in the end, I was diagnosed with Mitochondrial Myopathy.
Your doc is on the right track, if he is looking for that. The elevated Lactic acid levels indicate that your muscle is having difficulty making ATP ( the usable form of energy for muscle, nerves, etc.) The low level of Carnitine can indicate a form of Mitochondrial Disease called CPT or CPTII. Your symptomatic flares that you have had with illnes is also indicative of a Mitochondrial disease. I bekieve that the B12 def. has something to do with this disease, but as of yet no one has dicsovered how. I think more people like you and I would be needed to find out. Have you had a muscle bx done?
Also, I have had a long standing iron deficiency, that is not related to the B12 def. ( not Megalobolastic). My Hgb and Hct are normal and the def. is normocytic, normochromic. The problem is that I lose an average of 1500mg of Iron in 9 months. Every year I have to receive IV Venofer which is iron to get tanked up. I have no detectable avenue of losing blood. This iron loss and refractory B12 def is confusing, along with the Mito disease,and no doc thus far can put all of the pieces together.
I look forward to your response.
Thanks,
camelot