Hey everyone,
New here, and glad to see the board is up and running.

Here's my question:

Is it possible to have a b12 deficiency (my level was at 220) and NOT
have elevated homocysteine, elevated mma, be positive for intrinsic factor block or pareital (sp) cells?

I do NOT have any of those associated problems..........
I have been tentatively dx'ed with Combined Systems Disease.
and/or Multiple Sclerosis.

I have attacks of fatigue, spasticity, weakness, cognitive problems, speech issues, balance issues............scotomas, bladder issues.......

clear mri's, one positive LP for elevated protiens, no dtr in left foot, positive babinski right foot, positive rhombergs, and more......

I recieve weekly injections of b12 since the intial protocol in Feb did nothing.
Weekly shots began in May, with my blood serum b12 at 700 in July & Aug.

Any insight for me?
Thanks for listening!
take care
laura

Hi Laura, sorry I cannot answer your question,however I do have a question for you-what the heck is Combined Systems Disease??

And I wanted to say that the only doctor (neuro) that ever ordered a B12 test on me had it flagged as too high @ 900. After reading alot of info on the old BT site I began taking B12 Methylcobamin. I had severe cognitive problems @ the time & myoclonus (full body jerks).

Possible MS was also something several docs told me. You might want to take a few minutes to research Lyme & MS (Lyme mimmicks many neuro disorders).

Are you also taking folic acid?

Hopefully someone will be able to answer some of your questions soon!

I also discontinued the use of Splenda & aspartame about the same time I began taking B vits, I rarely suffer severe myolonic attacks these days & have improved ALOT in the brain department.

Take care,Buttons

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

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

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

Thank you, dear Buttons.

rose

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

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

I don't think that the SAMe fits in with all those others. B12 can raise your histamine levels. This relates to methylation and your homocysteine levels. The one that does not fit is the SAMe. Folic acid and b12 can raise histamine levels, but the SAMe would actually lower your histamine levels. So, that combo does not sound right to me.

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.

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).