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Vitamins, Nutrients, Herbs and Supplements For discussion about vitamins, vitamin deficiency, herbal remedies and other supplements. |
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09-24-2006, 12:26 PM | #1 | ||
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Junior Member
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Hi Buttons,
Subacute Combined Systems Disease aka: Subacute Combined Degeneration is a demylenating disease that very much mimics ms. It is a complication of chronic b12 deficiency. It causes the spinal cord to demlyenate in two locations corticospinal tract and pyrimidical tract. but since I don't have those other elevated test results, and no anemia, I wonder if I have a true b12 deficiency. You feel that the shots of b12 are what has helped you? I'm hardly getting any relief for my situation. I was supposed to take b1, b6 folic acid, SAME & vit E but I got horrible alll day pains in my stomach, and couldn't figure which vitamin was causing it. and was told to discontinue them. I do sometimes take them just because. I never eat or drink those artificial sweetners (and it show! ha ha) I could never stand the after taste. I've had several lyme tests including two spinal taps, one got sent to the lab in california that specialized in lyme, so I think that's been ruled out. thanks for listening, laura |
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09-24-2006, 04:33 PM | #2 | ||
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Those tests together will generally show one or more positive/elevated, but they are not 100%! None of them is 100%.
That is why some docs who are better informed regarding B12 treat everyone with symptoms. Also, there has been interesting evidence that even people with MS need B12 treatment. rose |
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09-25-2006, 10:34 AM | #3 | ||
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Junior Member
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Laura, I've never had a B12 shot. I take the Methylcobalamin under my tongue, 1/2 hr after I take my folic acid,B1,B2 & B6.
I also get stomach pains but not sure what causes it,I'm nauseated (sp) 24/7 whether I'm taking any pills or not! I have alot of nerve damage & extreme fatique, I swear by the B12. At one time I couldn't even recall how to push a button to turn on my computer! I truly believe I'd be dead now if not for all the supplements I take. I've given B12 to people suffering so bad from PN they could not walk. I give bottles of it as gifts to the alcoholics in my life! Rose, you are one of my internet Angels,thanks again for all the time you spend educating people about B12! Buttons |
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09-25-2006, 07:29 PM | #4 | ||
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Thank you, dear Buttons.
rose |
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09-25-2006, 08:21 PM | #5 | ||
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Junior Member
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O Buttons,
I know that feeling! I was sitting in a car waiting with a coworker to visit a client. I had a pen in my hand and was trying to operate it. I pulled it, I pushed it, I spun it over and over to the point of exasperation. When all of a sudden as if in slow motion this hand reached over very slowly, and then the index finger of my coworker very surely pushed the button at the top of the pen..........and viola.........I was so absorbed in trying to get this pen to work, I forgot anyone was with me. That was a very low day. I'm glad to hear that you are getting relief from you symptoms. And thank you too Rose, I appreciate your comments. I guess this is a long road to healing? Some of the damage may be irreversible? Is this true? Meeting tomorrow with PT for a "gait rite" test- whatever that is. Wish the neuro and pt could have spent the day with me, staggering around the office, vertigo, weakness, pain, spasticity and so on......... ugh. thanks for listening. laura |
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09-26-2006, 11:58 AM | #6 | ||
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I hope you will make much progress. There is no way to know; it is a very individual thing. Just don't let anyone convince you that it must happen quickly or not at all. Improvements can take place over several years.
I also know the feeling. There was a time during my healing (as my brain was about to make a great leap of improvement a few years down the road ) when I would shuffle two bills over and over with my checkbook trying write two checks and get everything in the correct envelope. Gait is how you walk. Best wishes to you too. rose |
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09-26-2006, 12:38 PM | #7 | ||
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Junior Member
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Quote:
Now, some people do have a problem with sulfur and can have problems with absorbing it through their GI tract. SAMe is a sulfur containing amino acid. The body gets rid of histamine through sulfation. So, my guess is that it might be the SAMe that is causing the stomach aches. But that is the problem with taking several supplements at once, you can't tell what ones are working and what ones are causing a problem. See, Buttons supplements include ALL but the SAMe. I don't understand why you were told to take SAMe. Fatigue is the worst, I know. I would think that you may have some other deficiencies that you and your doctor are missing. |
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09-26-2006, 02:51 PM | #8 | |||
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Wisest Elder Ever
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Can you tell us what doses you use for your supplements?
Do you use enteric coated SAMe? Enteric coated SAMe bypasses the stomach... it doesn't dissolve until the intestines. (it is not stable in stomach acid). Except for the SAMe and B12, most other vitamins should be taken with food. SAMe is best taken first thing in the morning at least one hour before food. Sulfur is very plentiful in the diet, you would be eating far more sulfur containing amino acids daily than are in SAMe.. which BTW is a natural substance your body makes. (your body does not make, vitamins--they have to be taken separately.) Mild gastric distress is sometimes reported by people beginning to take high dose SAMe, however, I have used it since 1999, and have never had an upset. Mild distress can be avoided with smaller doses in the beginning, and I think it has to do with the fillers in the tablets, not the SAMe itself. Your neurological issues if B12 dependent can include neuropathies including the GI tract (gastroparesis). So you need to focus on getting that B12 level up. (When B12 is very low, it becomes low in the spinal cord as well).
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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09-26-2006, 05:26 PM | #9 | ||
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Junior Member
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Hi Mrs D,
Yes, I gathered the pills here, in addition to a weekly shot of 1000mcgs of b12 I was/am supposed to take: Active B6 caps - 50mg B1 - 100 mg Folic Acid - 1 mg Super comples Vitamin E 400 iu and SAM-e full potency 400 elemental- highest concentration 400mgs kept in fridge. I always took the sam-e on an empty stomach, and the others through the day with food. I had the feeling that a little explosion went off in my stomach, and it hurt for about 40 seconds, then a minute would pass and the explosion would occur again over and over all day long. I'm luckily not a stomach achey girl. I had my gall bladder removed long ago. I have medullary sponge cysts both kidney and am a stone maker ugh. I have a list of maybe nine different amino acids I am deficient in. I googled them all, and each said it is very "rare" to be deficient in. Is this another clue? I am not vegetarian, I eat from all food groups. I didn't know neuropathies can occur in your digestive track. Interesting. thank you. orthomolecular thanks too, I thought the SAM-e helped to metabolize the b12 and make it available, or assisted in some way? hi rose, thanks to you too, I have been sick for three years before this nuero picked up on the 220 b12 levels. He also knows my old neuro said "It's too early in the disease to do anything about it" and I was fed up with her. She had done an lp that showed my spinal fluid b12 was fine, (with the range all things being relative I suppose) but the protein was out of range and she told me my lp was NORMAL. Any way, sick with nuero problems escalating and only started the b12 this very year. goofy brained today, went to doc for gait rite test, it's actually on this friday. more and more mistakes like that every day. thank you all for listening, I appreciate any clues you can give me. laura |
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09-27-2006, 09:25 AM | #10 | |||
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Wisest Elder Ever
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Properly packaged SAMe does not need to be kept in the fridge.
It should be blisterpacked to exclude moisture. SAMe does not dissolve in the stomach. If you do not take it with enough water, it could conceivably sit like a "pit" in your stomach and cause a local reaction. This can happen from any dosage form for any drug that is not properly swallowed with adequate water. At least 4oz, but preferably 6-8.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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