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  • B12 deficiency / causes & treatment

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    Old 02-06-2006, 04:13 PM   #1
    cdzhaha
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    B12 deficiency / causes & treatment

    Hello gang: In brief, I'm (just turned, ouch) 40 years old, B12 deficient-anemic, have MS and I'm interested in others' experiences in several areas re B12 deficiency. Sharing in any or all areas is very welcome...

    1) What was your B12 level when you were diagnosed? What was your RBC level?

    2) What was your initial treatment approach, once you were diagnosed? Did you start w/once a month injections, or more frequent injections tapering off to once a month, or something else (nasal spray, vitamin pills)?

    3) How did you determine the cause of your B12 deficiency? What tests were done, and what assumptions did your doc make based on other conditions you might have, etc.?

    4) Before treatment, did you have significant weakness in the trunk/abdomen "core" area, or water retention in your abdomen/legs?

    Thanks so much. I'm trying to solve a mystery that's resulted in several years of low, low energy, crummy immune response and high, high clumsiness. How many toes can one person break (one at a time!) slamming 'em into walls, floors, doors and furniture??? Ha ha. Thanks in advance for your input!!
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    Old 02-06-2006, 06:45 PM   #2
    Merimac
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    Re: B12 deficiency / causes & treatment

    Quote:
    Originally Posted by cdzhaha
    Hello gang: In brief, I'm (just turned, ouch) 40 years old, B12 deficient-anemic, have MS and I'm interested in others' experiences in several areas re B12 deficiency. Sharing in any or all areas is very welcome...

    1) What was your B12 level when you were diagnosed? What was your RBC level?

    2) What was your initial treatment approach, once you were diagnosed? Did you start w/once a month injections, or more frequent injections tapering off to once a month, or something else (nasal spray, vitamin pills)?

    3) How did you determine the cause of your B12 deficiency? What tests were done, and what assumptions did your doc make based on other conditions you might have, etc.?

    4) Before treatment, did you have significant weakness in the trunk/abdomen "core" area, or water retention in your abdomen/legs?

    Thanks so much. I'm trying to solve a mystery that's resulted in several years of low, low energy, crummy immune response and high, high clumsiness. How many toes can one person break (one at a time!) slamming 'em into walls, floors, doors and furniture??? Ha ha. Thanks in advance for your input!!
    I was 50 when diagnosed as B-12 deficient. My level was at 140 with under 400 considered low enough to have psychiatric symptoms as well as neurological problems both temporary and permanent. My RBC was 3.81 but my white cell count was 3.00. At the time I had no appetite, Cardiac Tachycardia, Fainting spells. I would be walking and would go through the motions to lift my foot to take the next step and the foot would not completely leave the floor and I would find my self coming down on top of the foot from an odd angle like the foot was dangling. IT was very painful and I fell more than one time when this happened. My vision became horrible in just a few months and I am still having problems with my left eye. I truly had many of the symptoms of MS. The headaches were pretty bad as well. I have always had migraine headaches since 8 years of age, but with the low B-12 the headaches were constant. I had the stomach cramps and fluid retention as well. My weight dropped like a rock from week to week until I started to gain fluid. My skin which is normally fair turned a lemon yellow color that varied from lemon to pumpkin from jaundice. My folic acid was not happy either which led to mouth sores. The doctors thought I had cancer and I got the complete once over for the colon cancer possibility. My hemoglobin dropped to 7 and my ferritin level disappeared. The other counts were very skewed as well. The hematologist started me on two 1000 micrograms of B-12 injection per week at the doctor's office one in butt and the next in the arm for a two week period, then reduced to once per week at 1000 mcgs and then after a month once per month. This went on for one year and then with iron supplements etc, my counts stabilized. Then I went off the B-12 for one year. I am now taking the B-12 again once per month 1000 Mcgs because the symptoms were returning.
    The hematologist order a CAT scan of my abdomen to check for any abnormalties such as stomach cancer, perforations, ulcers etc. A lot of blood work and he "guessed" that at my age, I probably had stopped making intrinsic factor due to a gastric by pass in 1998. Anyway, the long and short of the whole thing is that the small intestine has been by passed at the juncture that absorbs vitamins, minerals and calories, and my stomach does not generate intrinsic factor that would allow me to benefit from the B-12 in foods. I can not consume red meat or any other meat that is dense due to digestion issues. I can eat small amounts of tender fish, and tender chicken, that is it. The rest of my iron and b vitamin sources must come from supplements that can be injected or absorbed from another area of my intestines. Some of the neurological symptoms will never go away.

     
    Old 02-06-2006, 06:57 PM   #3
    cdzhaha
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    Re: B12 deficiency / causes & treatment

    wow! thanks ... you even mentioned a few things that i hadn't, like the weight dropping like crazy before starting to go up as i gained fluid, and heart fluttering ... you have no idea how much i appreciate your detailed answer.
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    Old 02-15-2006, 08:48 PM   #4
    mystiq86
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    Re: B12 deficiency / causes & treatment

    I've been on b12 for about seven months now. My b12 was about 200 when my doctor started giving me injections. All he had me to is some simple bloodwork. I gave myself the injections about every week, but now I take it approx every three to four weeks. I have had daily migraines for three years, but have already had a 50% reduction in my headaches, which is absolutely fantastic because I can function well enough to start college. I'm 19 by the way. It was horrible to watch my friends to go to college while I had to take a semester off but anyway, sorry I'm off topic.

    My blood pressure is chronically low; I was constantly fainting, about 10 times a day. So my balance is terrible. I think I run or trip over anything or even trip over nothing at all. I am always exhausted though that might be because of my terrible college student sleeping habits. I have lost a lot of weight in the last few months. My memory has improved since I have started the b12 injections. I haven't tried the nasal spray, but I'm fine with injections. Sorry I do not remember my RBC count, but I think it came back normal. Oh, I also have Hashimoto's Thyroiditis, so sometimes I am unsure whether my symptom are from the lack of b12 or because of the Hashi's.

    I apologize if I wasn't very helpful. I wish you well and best wishes.
    Natalie

     
    Old 02-16-2006, 11:18 AM   #5
    cdzhaha
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    Re: B12 deficiency / causes & treatment

    Thank you VERY much for your story. My B12 numbers are going up with treatment, I just found out, and I'm not anemic for the first time in years. Your comments on memory are encouraging ... I'm also being treated for subclinical hypothyroid, so the Hashi's comments fit in there somewhere, too. Thanks for helping with my big-picture information gathering, and I wish you the best of health. Christie
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    Old 02-16-2006, 01:07 PM   #6
    turl
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    Re: B12 deficiency / causes & treatment

    Merimec--what were you experiencing with your vision? I had some eye problems come on just prior to finding the B12 def., and it improved with supplementation. However, I'm now experiencing some other weird stuff and can't determine if it's B12 related or not.

    cdzhaha--my serum B12 wasn't tested prior to diagnosis, but a just a few years earlier it was in the upper range of normal but my MCV was high and I had "mild" symptoms. I was tested via methylmalonic acid and found the B12 deficiency after intense fatigue and breathing problems set it.

    I had a lot of trunk "weakness". My ribs wouldn't seem to stay in place and they'd "click" all the time whenever I shifted position. I couldn't lift very heavy items, etc. Also, with my fatigue, I couldn't tell how much was actual fatigue or structural weakness.

    I supplement daily with high amounts of oral B12--both methylcobalamin and adenosylcobalamin, and I'm doing SO MUCH better. I have energy, my memory seems so much better, my breathing is really good now, etc. I'm 43 and don't know the "cause" of my B12 depletion and haven't searched--I've long been fed-up with the medical establishment whose early response was "anxiety" or whatever. Funny thing--my anxiety has gotten better w/ B-complex suppl. too.

    Anyway, good luck to you!
    Tab

     
    Old 02-16-2006, 01:45 PM   #7
    cdzhaha
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    Re: B12 deficiency / causes & treatment

    ohmigosh!!! i had the rib thing/breathing also ... wow. the only thing that gave relief was chiropractic and that was only temporary. breathing has now gotten shallow, but w/o the "hug" sensation that i had (which i had blamed on MS, until it didn't behave like MS).

    i'm keeping my fingers crossed that supplementation will cure much of what ails me!! i think i'm gonna cry from reading other "crazy" people's stories. thank you thank you.
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    Old 02-16-2006, 03:55 PM   #8
    turl
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    Re: B12 deficiency / causes & treatment

    LOL....I did the whole chiropractic thing too. I didn't know the rib thing was B12 related, and I started the chiro at the same time as I started on B12. I'd never read, in all my reading about B12 in the last year, that "loose ribs" could be a symptom of low B12. Well, have hope--it does get better. You're taking shots, which is great, but you could supplement the "off days" with methylcobalamin (at least 1000 mcg) and hopefully then not suffer any "down time" like I hear a lot of people talking about (how they get to feeling "low" leading up to their next B12 shot).

    You were just Dx'd with B12 def? How long have you had MS? Did they check B12 levels during your MS testing? I know that sometimes MS has a correlation with low B12 status, but I also have heard of some "mis-diagnosis" w/ some MS actually being B12 def. One was a case that made the news a couple of years ago in Indiana. A woman was Dx'd with MS for 26 years and almost bed-bound when her long-time doctor died. Her new doc ordered up new tests and discovered she actually had B12 def. and not MS. She sued the late doctor's estate.

    Have you had the levels of the other Bs checked? Low thiamine (B1) can cause shortness of breath too. I'm low in most the Bs.

    Do you have tingling ("buzzing" or pins and needles in your feet or hands)? I have it and thought it should've gone away by now for me (with a year on B12), but it appears it might be related to low B1 instead. I just started on benfotiamine (B1) again and the buzzing is much less (I thought I was getting enough in my B-complex).

    I'm excited for you--glad it got uncovered. It's amazing how important a "simple" vitamin can be.....and how much more prevalent low B12 status is that previously thought.

    good luck!
    Tab

     
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