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Hello,
I am new to this website. I am going through the strangest episode that I think you may relate to. My older brother has pernicious anemia, which is the B12 deficiency in which one lacks intrinsic factor in the stomach. About 7 months ago, I started having some major neurological symtptoms, including burning in buttocks, right hamstring and thigh all the way to my foot. Now I have aching joints all on my right side. I have been checked for B12, but I was told the test came back normal. Now I have ringing in my ears. I have been put on Neurontin 600mg 3x per day, but it seems to have very little effect. Do you suggest using B12 even though the doctors say that I am normal as far as b12 is concerned. I'm looking for a miracle here. I've been married 18 months, and in that time my health has gone from perfect to pathetic. I've been to more doctors and specialists than I can count. I had a Disc removed from my spine last April of '04. I was fine after the surgery for about 3-4 months. I started having burning on my right upper body. I was given a CT-Myelogram which I was told came back as normal. Then after about 2-3 more weeks, I had all these neurological freak outs. I didn't even know this stuff existed until I started feeling it. Anyway, I've been told it's all in my head and that I have nothing that would show up on a test to reveal something is wrong with me. I know that I feel WRONG. With my brother being diagnosed at 32 and I'm 29, I wonder if there is a link. Please advise as I said, I'm looking for a miracle. Can I just go get B12 at the pharmacy? My brother has to shoot it into himself about once a month.

Rich
phd,

I'm in, have been, in a similar boat as you. I became a vegetarian (not a vegan) way back in 1992. A year and a half later, I was feeling weak legged and having tingling in my toes. My vitamin B12 level was checked, and it was very low at 98 (normal range runs 250-1100). Up to that point, I had taken no vitamin supplementation of any kind. The doctors gave me a b12 injection, and I started taking 500mcg of cyanocobalamin (b12) orally, not sublingually, daily. I started feeling better and figured I was covered with a daily pill. Three years later, my b12 was checked again, and I was told it was in the normal range. It turns out it was in the very low normal range, but the doctors didn't tell me that. Fast forward to 2002, I was catching colds frequently and not feeling well overall. By this time I had dropped my daily B12 intake to 50 mcg daily (800%) assuming that was more than enough. A CBC was done and showed a slightly high MCV value (which can indicate a B12 deficiency). The doctors didn't make an issue of it, a b12 level was not checked. Then, one day in March 2003, I came into work, sat down at my computer, and, as if someone turned on a switch, I felt an immediate tingling and numbness in my fingers and toes, followed a few weeks later by a loss of balance, and some other strange neurological symptoms that didn't last.

Its two years later now, and I am improved from where I was after having montly B12 shots and taking daily 1000 mcg doses of methylcobalamin (a more useable form of b12), but I am still much diminished from what I use to be. Both my peripheral nerves and my spinal cord were damaged by this. I still have tingling in the feet, and my joint position sense (balance) is still impaired but better. I'm a 37 year old male. I have subsequently been diagnosed with Celiac disease, and have autoimmune (ANA) anitbodies, both probably contributing factors to my malabsorption of Vitamin B12. I now eat meat once or twice a week, to be on the safe side.

You're doing the right thing taking the large dose of b12 daily, assuming this is a low b12 issue. Even with lack of Intrinsic factor, I think I've read that very large doses, even orally, get enough B12 in your system. But I'm sure if Intrinsic factor is the issue, you should be getting injections. Did you ever actually get your B12 level checked? I would guess if your balance hasn't been affected, and your knee reflexes aren't hyper, this hasn't affected your spinal cord (central nervous system) yet, and you will make a complete recovery over time, but it can take awhile. Good luck.

Eric
Have you had the blood test or bone marrow test for it? Mine was the Schilling test but it was inconclusive so I had to have a bone marrow aspiration test and that is when it was found. Believe me, before 1995 I never heard of a B12 deficiency or pernicious anemia. When I started my geneology back in 2000 I discovered my grandmother died of a b12 deficiency or rather the results of the lack of b12 complications. b12 isn't tested as part of the general chemistry lab work, it is through a consultation of a neurologist that eventually sent me to have lab work. I came ther complaining of electrical shocks that felt like a lightning bolt go through my top of the head to the feet and I thought I was blacking out when in reality people around me didn't know it happened, it wasn't even painful just startling, my memory was getting bad and my boss insisted I see a Dr cuz I couldn't find the correct words to use in a conversation, my pronouns were used incorrectly etc. My speech was slurred like a drunk and I don't even drink. I couldn't tell you what 99 from 100 was without working it out on paper and then still haveing a problem, I do lots of math at my job. He sent me on my way after an hour testing me for cognitive depression for lab work and that is how it works. When you can walk into a Dr office and they ask you "what is this"? and I answer in French there is a problem, cuz I don't know any french, but my grandmother use to sing to us in french as babies but she died by the time i was 4. It's a test that has to be requested for whatever reasons by another dr. I to have many nerve disorders, polyneuropathy, RSD, perepheral neuropathy. Your Dr may not see any signs of b12 def or your level has been tested without you knowing and it was normal. Neurologist tend to test for it as a precaution sometimes, my first neuro looked at my brain scan with all the lesions and sent me home thinking I was just getting old (I was 46) after the years of treatment most of those lesions are gone. I'm now 57.
I am 55 years old and have suffered from numbness and tingling in my feet and half way up my calves for about 3 years. I talked myself into thinking I had a neuroma but then the pain started and I could hardly walk. I went to a podiatrist and he gave me cortizone shots in both feet -said it wasn't a neuroma but didn't do anything to find out the cause. He wanted to give me Neurontin but I wanted to find a cause. So my family doctor put me through a lot of tests and said the only thing that came back unusual was that my B-12 was 403 and that was kind of on the low side. When I told her my mother and sister had Pernicious Anemia she did the Intrinsic Factor test for that. It came back positive so I didn't need further testing. She started me on B-12 injections (I had to go every day for a week and then once a month). I also had an EMG to confirm neuropathy. I am also on 300 mg Neurontin (generic form) twice a day and it's helped a lot. One thing that upsets me reading this thread is that some doctors do not think of a B-12 deficiency if you are in the "normal" range which is 200-1100. You can have a normal B-12 level and still have a deficiency. Thank goodness my doctor was on her toes. She said it isn't the first thing they think of. After reading about Pernicious Anemia and the damage it can do makes me want to kick myself for not taking it more seriously. We all thought Mom's condition was no big deal. Well I'm paying for that now. Keep at your doctor for further testing. I'm also taking sublingal methylcobalamin b-12 daily although they say they aren't sure how much I'm absorbing. My b-12 level is now at 1488 and I'm feeling so much better!!! I also take Foltx which is B-12, B-6 and folic acid. It's a perscription.
litersk





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