I thought I'd pluck your question off of gooberoobu's thread.

Fix your stomach? What does that mean?! Sounds a bit archaic to me.

Do you have the MTHFR mutation? I remember that you had some odd thing like that. Or was it the clotting disorder? If so, you have to take methylcobalamin (not cyanocobalamin) and folic acid every single day for the rest of your life!!

I don't have any idea how long I was B12 deficient. At least two years. The cyanocobalamin shots weren't raising my B12 much at all. It was when I began taking methylcobalamin sublingual tablets that it went up. I took mega doses every day for a year, but I still had damage. I can barely feel my face when I touch it. Oh well.

But, again, I don't know how long mine went undiagnosed. They say that it takes as long to recover as you've had the deficiency. You really have to take B12 2 - 3 times a day, every day (plus folic acid). I suggest getting a separate supplement of folic acid with a small mg. amount (so that you don't overdose). You can't get too much B12.

The cyanocobalamin shots might help with your liver stores, but the liver still has to convert the cyano to methyl before your body can use it! So why not keep taking the methyl. Again, that depends upon whether you have the MTHFR. Yeah, I know what other words that looks like!

Did they check your parietal and intrinsic factor antibodies?

Let me know if I can help out in any other way. A B12 deficiency makes you feel awful, and I wouldn't wish it on anyone!


Annie

Thanks so much Annie!!!

Yes, I have numbness all over really.. when they did a epidermal nerve biopsy it showed "significant decrease" in my nerve fibers- aka it was a non length dependent small fiber neuropathy... then I Have the droopy eyelids and MG/LEMS symptoms too

but as far as the stomach.. my stomach issues actually preceded my neuro ones.. I was pregnant back to back (nursed both kids).. had a traumatic surgery.. and after that it all went down hill.. i was not intelligent and continued breastfeeding.. when I got home from work one day (after i had lost a TON of weight secondary to my GI issues, I pumped out 18 oz of clear "milk" and realized I am starving my body of nutrients.. and not helping my daughter)! and stopped nursing immediately... but I think I stripped my vitamins with the GI issues plus pregnancy and nursing..

Anyhow,, they think I have crohns now.. as IVIG helps my stomach.. but i have had a major flare this month- becoming quite obvious something serious is going on there.. with my sister having crohns and we have the same sx - they think that's what it is... so i'm getting worked up for that

I do have MTHFR (haha love your comment as what that looks like)! I am homozygous c67tt (which is the "bad" one to have, from what I read).... I am low in zinc, B1 (was undetectable), b6, b12, folate and something else)...

I have started taking methylcolbalmin, as I read that helps neuro issues better as well.. They are planning injections - and I will specifically request mythyl.. I am going on 3 years with alll this, so I don't know that it will "fix" me at this point.. but I am hopeful it will help - I have less fatigue already!

They have not checked those antibodies- though my uncle just told me that he was told years ago he had pernicious anemia and had to take b12 shots - interesting!!

My MRI actually also shows a myelopathy - consistent with b12 deficiency! So we are pretty hopeful that maybe we are starting to figure out some of this whole mess, and connect the dots to everything - it is all making a little sense now!

I feel guilty for abusing my body so badly for those years of pregnancy/nursing and more.. ugh... hind sight...

Sorry it's taken so long to get back to you. It's been one of those weeks. And then, of course, I had to stay up late last night to see the blood red moon/eclipse. Way cool.

Intelligence has nothing to do with any of this! Are you a psychic? How could you know that you had deficiencies? There are so many people who have a deficiency and don't even know it!

Did they ever do the Reticulin antibody test for CD? They dropped that antibody, because they wanted a "magic bullet" one. Stupid. You do GF, right?

If you haven't read this article, it's a great one for differentiating between the kinds of MTHFRs.

http://mthfr.net/mthfr-c677t-mutatio...ol/2012/02/24/

Did your husband (?) get tested for the gene, too? It's very important to know if your kids have one or two genes!!! The treatments are different. They need testing, too.

Guilt isn't helpful at all! Let it go. You did your best and are now taking care of it.

They literally call what you have to do for MTHFR a "protocol." That means you have to do this for forever. I'm not a doctor, but I would recommend that you nip the B12/folic acid thing in the bud immediately, strongly (B12 only), and consistently.

You really need to find out if you have pernicious anemia. It could only be the MTHFR, but if you have PA, that means you don't have enough stomach acid to break food down. That would contribute to GI issues and vitamin deficiencies. Don't assume it's Crohns. Since PA is autoimmune, it might be helping that—if you have it.

Is your sister being worked up for MTHFR?!! Any other family members this might affect?

I think that if you aggressively treat the B12 deficiency, which affects all of the cells in your body, then you have a good chance at healing your peripheral nerves. Your body might act like a sponge for B12 for the first several months to a year, due to how long it's gone without it. Imagine a vineyard, after a drought. Every single plant (system in your body) needs to be replenished with fluid and nutrients.

I hope you get the answers you need. And quit beating up on yourself. We need a national holiday, like "Women, Stop it!" day.


Annie

Thanks so much Annie!!! I really appreciate it!!! I do have a question - I am still awaiting the B12 injections.. but in the meantime, it's not harmful to take 3 sublingual 1000mcg B12's is it? If I am only absorbing a fraction of that, it seems like it would be beneficial to take a little more... I have noticed that my Lhermitte's sign (which can be casued by b12 deficiency I found out - and my C spine MRI looks like B12 deficiency as well - so the dots are connecting).. is improving as are the muscle twitches! I am so excited about that!

Take five of them!

Anything you can take is beneficial, but I would highly recommend getting the 5000 mcg. tabs and taking them three times a day until symptoms improve, and then two a day for life.

Yes, it is exciting to feel better after having that damn deficiency! I was grateful that I wasn't falling asleep everywhere anymore.

In your case, too much methylcobalamin is NOT harmful! Too little is. But it has to be methyl, not cyano. They do have injectable methyl. There is a chance of a reaction, because it's a drug, but you probably won't have one.

I'm so glad that you are having this taken care of. What a great relief!


Annie

Thanks so much Annie!

I didn't even realize they sold 5000mcg pills!!! I have been using methyl as I did read that it has been proven to help neuro symptoms wereas the cyano (which I don't want any of that in my system), wasn't as useful for neuro issues..
What kind of reaction does the injection cause? That is the injection i was wanting to set up, I believe most people do cyano injections as the standard, ,but I was gonna ask the doc specifically for Methyl injection..

I sure would love if it was as simple as getting my stomach in line and taking supplements!! My sister is on Humira, they talked about remicade for her crohns as well.. and I know a lot of people are on Immuran... so similar to a lot of the MG treatment.. keeping my fingers crossed this all works, and we get actual answers!
thanks so much for your help!!!!

The point is that you CAN'T have cyano in your system! It won't do you any good, due to the MTHFR!

Any reaction would probably be a localized pinkness. I'd say redness, but that's not really accurate. I did fine on the shots, and had absolutely no reaction.

Take it one step at a time!

Amazon has Jarrow 5000 mcg. tabs and they're cheaper than from iherb. In general, I like to get my supplements at iherb, due to the return policy, free shipping, etc.

Whatever else you do, you might want to take things one thing at a time, so that you can know if you're having any side effects or not (not from the B12, but the other big drugs!).

Annie