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Old 05-23-2009, 09:06 AM #1
pearl girl pearl girl is offline
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Join Date: Feb 2009
Posts: 78
15 yr Member
pearl girl pearl girl is offline
Junior Member
 
Join Date: Feb 2009
Posts: 78
15 yr Member
Thumbs up pernicious anemia update(chemar; mrsD; anyone?)

Hello! and another thank you to all who have helped me in the past. I've been 'away' but have some good news to share and, of course, a few questions please. I seem to be very good at asking unanswerable issues, but if I can't try here, where can I go??

(1) Personal update: I saw my MS neurologist yesterday and he declared me essentially 'cured' (I suppose he meant better than I was or as good as I'll get.). BREIF RECAP: When I first saw him 1/22/09 it was to verify MS due to dark spots on brain - which he dismissed, also extensive paresthesia & numbness. As a parting thought he suggested we check my b12 - which was an astonishing 68! (Also, I was finally diagnosed w/pernicious anemia. tested positive for IF antibodies.)

Since then I have been taking a very modest regime of supps (when I read what others are taking) : NO SHOTS; 2000 jarrow methy-b12 daily, ad-b12 1/day, b-right 1/day; solgar folate 800mcg/1per day; RxOmega-3 factors and multiple vit/min supplement; E & C. Follow-up blood work was B12 1040 and 810. I'm due for another test Tuesday.

My balance has improved; the fingers are better- could not type or write when I first saw him; legs are more 'predictable' - don't stumble as often. I actually can run up our stairs to second floor - sometimes. Feet are not constantly buzzing,burning or freezing -- but still have that weird 'second toe' problem w/numbness. Mid-thigh to mid-calf, esp. knees, feel like they have tight rubber on them - doesn't seem to interfere with ability to walk most of the time, just feels strange. L'hermitte's seems to be FINALLY diminishing. YIPPEE. Reflexes are back. And my tongue which caused extreme pain & swelling for 10 years is completely normal. (note: unfortunately my hair is still very white, very prematurely )

So he was very very happy with my progress; said to continue what I'm doing and come back in six months. My embarrassing question :Is this improvement possible so quickly and without the super mega doses of sub b12 (i.e. 10,000+/day)??

My attitude/mood is about 100% better. (brain fog still very thick - brain damage is probably not repairable: brain atrophy) My sister & husband say I'm like a new & improved person.... So this is all GOOD, FABULOUS. I know this seems weird & paranoid, and it is, but when I read about the struggles of others for years without improvement, it makes me wonder if this is some kind of a crazy false start. Well, WHATEVER it is, I am sooooo grateful.

(2) I have read several references to stock-piling supplements (WD.com), i.e., m-B12, due to 'something' happening later this year. SCAREY!!! What does this mean? anyone have any idea?? (some of these were posts from other countries)

(3) Also, someone asked if you could experience fatigue without anemia. My personal answer is a resounding YES YES YES... for me the fatigue/exhaustion is the one thing not much improved. Extensive blood work just does not show any signs of anemia.... just the inability to process b12 in my stomach. So WHY am I tried most the time. (I don't expect an answer, of course...) I suppose being a couch potato for many years does not help. Nor does being unable to work for five years. I read that exercise cannot actually help nerves repair but stronger muscles are of course helpful in walking, etc..

If I am asking things already answered or addressed or just plain nonsense, please forgive me. Reading has always been difficult due to extreme dyslexia, AADD, plus, and I really have trouble making sense of much of what is said here.... but I do feel your concern through the confusion.

Any thoughts or comments regarding above would be, as always, very much appreciated! I honestly believe my life was saved ! Nancy

PS I sure do enjoy all these smilies... (no kidding! hehe...)

PPS Someone please write - anything - it's so embarrassing when you pour your heart out and open yourself publicly - and no one comments. My low self esteem won't handle it well. What a fruitcake I am. Ahhh, life's a real trip, isn't it???

Last edited by pearl girl; 05-23-2009 at 09:10 AM. Reason: confusing typo corrected
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