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#21 | |||
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Member
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Your B12 is in the low range and worthy of treatment. Your doctor should have drawn a methylmalonic acid and homocysteine to prove that this is what was making you this ill.
But you do seem much more ACUTELY ill than most of us, who have had symptoms come on a bit more gradually, and it sounds as if you should be closely and aggressively followed. If your doc has drawn the mma and homocysteine, start the methylB12 immediately. But you are probably one of the few people for whom a wait of a few days would be worthwhile if the other tests weren't drawn yet. Just that as suspicious as you B12 is, your diffuse symptoms coming on quickly could be something else. So I'd say blood test THEN lots and lots of B12. But quickly.
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LizaJane . --- LYME neuropathy diagnosed in 2009; considered "idiopathic" neuropathy 1996 - 2009 ---s/p laminectomy and fusion L3/4/5 Feb 2006 for a synovial spinal cyst |
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#22 | ||
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Member
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Oops. I just added to my post because I now see that Liza Jane beat me to it. Yes to what she said!
If you want further testing, the thing to insist upon would be methylmalonic acid and homocysteine. If you are deficient, wasting time taking another unreliable B12 test is not a good idea. I would insist on the two tests, MMA and Hcy, early next week. And then I would begin taking methylcobalamin on the way out of the lab. If they won't perform the tests early next week, I would begin the methylcobalamin anyway. The important thing is your health, and this is a possibility. If you need it, the damage will continue until you get it! rose
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I will be adding much more to my B12 website, but it can help you with the basics already. Check it out. . |
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#23 | ||
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Member
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Thanks for your message re. the Vit B12. As my B12 level was tested with pmol/L unit of measurement it may not be as bad as you assume based on what you are used to. Pmol/L is a SI (Systeme Internationale) system of measurement which much of the world uses. If you use pg/ml then that is called CU's (Conventional Units).
The conversion factor for B12 is: 0.738 so - to convert from the conventional unit to the SI unit, multiply by the conversion factor; - to convert from the SI unit to the conventional unit, divide by the conversion factor. Therefore my B12 level of 267 pmol/L (SI) converted to CU's; I need to divide 267 by 0.738 which gives me 361 pg/ml. Does that sound better? I know it is still not as much as in Europe and Japan where it is purportedly said that they use a 550pg/ml equivalent cut off (if I am correct). Any feedback on 361pg/ml would be appreciated!!! |
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#24 | |||
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Wise Elder
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Megan:
I'm sitting here reading your post. I am 60 years old. I never did that well in math in school. I excelled in language skills because I can speak 5 languages. I wish math was a language that I comprehended, because you should have seen my face when I read your post. I read it three times. The best line you wrote was : -------------------------------------------------------------------- to convert from the conventional unit to the SI unit, multiply by the conversion factor; - to convert from the SI unit to the conventional unit, divide by the conversion factor. ----------------------------------------------------------------------- I should have studied harder.... lol I know that others will come on board and understand what you wrote. I only wish I had the brains. I'm pretty, but stupid lol lol lol Melody
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. CONSUMER REPORTER SPROUT-LADY . |
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#25 | |||
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Junior Member
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Hi Megan,
I haven't read through all of the posts yet, but you were asking about a Lumbar Puncture. I had one last year. It wasn't that bad. The worst thing was a headach that lasted for most of a week. With the Lumbar Puncture they were able to rule out may diseases to include MS, CIDP, and many types of cancer. I think it was worth it to at least rule out things that I didn't have. Good luck. You are in the right place.
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. ~Julie~ "With God's help you can smile through the pain and find joy in your journey": . |
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#26 | ||
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Senior Member
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Megan, Rose is our B12 expert so i hope she comments, but i wouldn't like to be that low myself, up around the 1000 mark at least would make me feel a hell of a lot more comfortable when your nerve's are damaged.
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#27 | |||
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Senior Member
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Megan,
I'm not liking that B12 figure even with the conversion figured into the total. I remember reading that anything below 500 is suspect when suffering from neuropathy. I totally agree with what Rose is telling you. She has much personal experience and has spent many years studying B12 problems. Billye |
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#28 | ||
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Member
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The B12 test is unreliable, and that still is a very undesireable level for anyone with symptoms.
Although less common, people have been deficient while testing in the 700s. rose
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I will be adding much more to my B12 website, but it can help you with the basics already. Check it out. . |
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#29 | |||
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Member
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Quote:
ROFL!!!! Oh, Mel! You're not stupid! If you are than I are too! /me don't do maths. I wish I could make sense of the post too. So I'll have to go back and read that one several times and hope a bit of it gets past the math-police. ![]()
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We are not amused. . |
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#30 | |||
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Member
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LOL Hey guys.......don't feel like the Lone Ranger on this one......I have NO idea what all that means! LOL
__________________
. Dx'd with Spinal Arthritis 09 Upper and lower Spinal Cord Stimulator surgery Replaced IV port 09 Had surgery for IV port for IVIG infusions 07 Halo 360 & 90 procedure for Barrett's esophagus Dx'd Chronic Axonal Neuropathy & Myopathy June 07 Dx'd IC May 2006 (after suffering for 25+ yrs!) Gall bladder surgery Aug. 2004 Gastric Bypass Dec. 2004 Dx'd: Barrett's Esphogus July 2004 Bladder surgery 2000 Dx'd: IBS 2000 Hysterectomy (fibroids) 1999 Laminectomy 1989 Dx'd: Degerative Disk Disease 1989 Cyst removed from my ankle -twice 1986 |
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