It's been about 3.5 months that I've been on B12 treatment. I had my first shot on March 8, was to then wait a month for the next shot (this was before I learned about proper B12 treatment when you're discovered to be low), couldn't make it (got really sick, weak, couldn't breathe or think! near psychosis episodes!!!) and got the next shot on April 3. Then, couldn't make it but a few days after THAT shot and got my next one April 6! Then convinced that doctor needed every-other-day shots with methylcobalamin. Did that for a couple weeks but then learned about this forum, the "swinging" of B12 ups and downs in the beginning, especially with shots, and using oral (sublingual) B12 at high doses, etc. I've been on 5000mcg Puritan's Pride every-other-day. On the "other day" I take 3000mcg dibencozide from Country Life. This way I'm getting both active forms of B12 into my body. I take them first thing in the morning on an empty stomach, and let them dissolve under the tongue for a little while (the Puritan's take a LONG TIME to dissolve) before swallowing with water. I don't eat for at least an hour after taking them.

Some things have gotten better, but I notice A LOT of things have not, and may be getting worse, if they are at all attributed to B12 deficiency. Now, let me say that I think I have been deficient for years looking back on all this. I had apathy and extreme lethargy and fatigue kick in sometime in 2007 and 2008! In 2009 it seemed to get worse. Now, I was on inhumane doses of antidepressants at the time, so I thought everything I was going through was attributed to psych drug use. I never knew that I had something else going on. It didn't make itself ultimately apparent until this year, when I got my test results and became VERY VERY sick (confusion, near psychosis moments, dizziness, breathlessness, bleeding gums, absolutely no appetite, trouble sleeping, etc too many symptoms to list!).

My question is, is it normal to be having more and perhaps new symptoms of B12 deficiency this far out after treatment? My last check of the level was May 8, and it was 1,844. The symptoms I'm still having trouble with and that scare me the most with regard to this deficiency are muscle and just allover mass "wasting." I voice this concern to everyone I know (my arms are a lot skinnier than they have ever been in my entire life). My friends tell me that it's "all in my head" but I know better! My feet have also shrunk in shoe size a little bit! Shoes don't fit as tightly as before anymore. I voiced these concerns to my doctors, who say everything is normal, and that have I lost weight? I lost a great deal of weight in 2011 and early 2012, but I have since been gaining significant weight back on. (When this whole B12 ordeal began back in late February, when I got tested, I was getting down to the 130s in weight. I am now about 155-160! I am a 5'10" tall man.) How can I be gaining weight yet losing mass in my arms and feet? It's so strange. The only thing I can attribute it to is B12 deficiency, should nothing "else" be going on (and doctors really don't think anything else is going on - no disease processes). I also have a lot of nerve/muscle twitches. A LOT. And they are all over my body. I was so scared by them that I thought I had ALS, but I haven't had any "clinical weakness" and I saw another neurologist who said I couldn't possibly have that (he actually thinks I have NO neurological disease whatsoever - no MS, nothing). He said that it took a long time to get as sick as I am, it will take a long time to get better (he was well aware of the deficiency in B12 and that the numbers are back up, well above the "chart normal ranges" (which I realize are antiquated)). But really? How long?

Mrs D, I know you specifically have spoken of a friend on the board named Rose, and that she suffered a long time with B12 deficiency symptoms. (I've seen her website many times during this for support.) If you don't mind my asking, do you know what kinds of symptoms she suffered? Did she, too, have muscle twitches and muscle "wasting" (I hate to say wasting or atrophy because my doctors have confirmed I don't have clinical "atrophy" as if this were a muscular disease, but I do notice nearly everything on me is a bit "shrunken" if that makes any sense! )? She saw a slow, long recovery. Will I be permanently "damaged" by B12 deficiency? My mind and body are not what they used to be, and this is frightening to me. I worry that I will be this way forever sometimes.

Things that have come back/gotten better are my appetite (it's not great but it's getting better, the dibencozide really helped kick this back into gear), I'm not as dizzy as I used to be but I still have dizzy spells, my vision is a lot clearer, not as many days with spots in my vision, some of the nerve pains have gone away, a lot of upper back pain that I think may be related to this has gotten better, although I still have bad days, my memory is a little bit better, but still have some foggy days. My hair has grown back a bit!!! Now, granted, I'm still in the thick of antidepressant withdrawal, and ALL THESE things could be related to that, too.

If you can shed any light on to what to look forward to or what those who had very, very bad B12 deficiency experiences felt, it would help me so much. Especially about the allover "wasting" -- people say I "look fine" but really I know what I used to look like and this is not me. My arms and wrists feel weaker and sometimes I get numbness and tingling in the hands! This is new! But doctors have tested me and say I am fine. I just don't get it then.