[Katanya]

Please help! Newbie, please read profile, mom had Pernacious Anemia, feel tired all the time, swollen tongue on empty stomach, gluten problems, hematocrit levels always off, enzymes and alkaline phosphate off, feel better for short time with spinach and kelp! History of infertility, does thus sound like Pernacious Anemia?

[mrsD]

Welcome to NeuroTalk:

I think you should start with some tests at the doctor.
B12 for sure, and Vit D.

Many doctors call very low results "normal" because the lab ranges have not changed for B12 and hence are outdated. Please read this thread to understand how to interpret and choose a B12 supplement.

If you have gluten issues, you may not be absorbing many other nutrients. But start with the B12 first, as it is very common to be low in people with gluten intolerance.

Infertility can be from PCOS, or high consumption of trans fats (this is new information) from the diet. Being underweight also can contribute. I'd start with the vitamin testing to see where you are at, and go from there.

[EddieF]

Was said to post Vit D here so here goes..
Today's MS support group meeting, one guy's taking 10,000 i.u./day = level 30
I take 2000i.u./day & my level's holding 90's. Everyone's different, you have to get tested & not go by dose. 8000iu's had me over 120.
I also told all to try 500mcg's B12 cause I heard many say they've been tired lately. The guy taking 10,000iu's of D is starting B12 shots next week.

[polygon]

Hello, just found this forum while researching.
I got my blood test results the other day.
My B12 levels were at 100.
Now that I'm researching, I'm very concerned about it. Started taking 2mg of B12 two days ago.
My doctor didn't recommend a brand of supplement, tell me how much to take, or suggest injections, nothing. My iron is also very low.
I'm experiencing pretty much every symptom associated with b12 deficiency, and have been for at least a year. Been vegetarian for 8 years, because of moral opinions and a health condition.

How long will it take to stop the symptoms? My parathesia in my legs is a little painful. I thought it was my multiple lipomas sitting on the nerve, but they aren't, so I assume it's a symptom. Kind of worried that my levels have been low for a long time, but is it possible that something like an infection could have lowered them a lot as well? I had pneumonia from june until the middle of july this year, and since then the chronic fatigue, tingling, spasms and twitches have all gotten much, much worse.

Thanks if you read this.

[Marlene]

Even though this post is not about b12 and PN, it's relevant in that this study confirms normal blood serum levels cannot be relied upon to diagnose anemia and cannot be ruled out in cases of anemia and PN. Like Mrs D states in earlier posts, most doctors believe you need to have a below normal B12 result for it to be considered as a possible cause for the blood or bone marrow disorders as well as PN. And if you're not anemic, your PN cannot possibly be from low B12 status. Well this study pretty much debunks this medical myth.

My husband had Severe Aplastic Anemia back in 2002. I wish I knew this back then so we could have tried B12 as his first line of treatment. Especially during that waiting period of getting a final diagnosis. We had two months before he started treatment. His B12 was normal at the time...I think it was under 500 though.

http://www.ncbi.nlm.nih.gov/pubmed/21252496

In the 12 cases here, all three lines, red cells, white cells and platelets were low.

[mrsD]

Thanks, Marlene! That is really interesting.

[Robibbie1]

Thank you guys for this great discussion. I have been looking into mecobalamin aka methycobalamin. Has anyone had a good experience with this coenzyme and with which brand/formulation? I am persuing the herbal/exercise regime to nourish my lower leg and foot nerves. Any comments and experiences that anyone can relate will be appreciated.
Robin

[MelodyL]

Originally Posted by Robibbie1

Thank you guys for this great discussion. I have been looking into mecobalamin aka methycobalamin. Has anyone had a good experience with this coenzyme and with which brand/formulation? I am persuing the herbal/exercise regime to nourish my lower leg and foot nerves. Any comments and experiences that anyone can relate will be appreciated.
Robin

Hi there.

I'll hop on board this thread again. If you look at all the replies, you'll find me somewhere on all these pages.

I have been saved by taking Methyl B-12 every morning, and sometimes every other morning. My B-12 level is steady at 2000. Been doing this for quite a few years now. I get mine from Puritan's Pride because they have these good deals, buy 2 get 3 free and you can't beat that.

Helped me like nothing else could. I am completely free of neuropathic pain. I do have some numbness still at the tips of my toes but I have complete feeling in my feet and no burning or tingling.

Saved my life. I also control my blood sugar and don't eat processed foods.

So for me, Methyl B-12 was and continues to be a lifesaver.

Take care

Melody

[Shezian]

This helps so much. It's nice to have someone to talk to about this.

I have many posts to come.


Sue

[julleri]

This is my first post on this forum. I am really glad to have found it, as I've been recently diagnosed with low B12, but my own research has been more valuable than my doctors' knowledge on the subject.

My level tested in February was 204. The doctor who found this gave me a shot of B12 and I felt better almost immediately. He said that I'd get another one in a month, and that if I wanted to in the meantime I could take B12 supplements or didn't have to (see what I mean about doctor's lack of knowledge?).
A few days after the shot I tried a 3000mcg sublingual B12 pill and it drove me crazy. I immediately called the doctor office and they said that if I'm getting the shots once a month I don't need the pills. I immediately stopped the pills.

Nearly a month went by and I started to feel very sick. I would get very weak, confused, fatigued, feel like the life was just sucked out of me. I began to have spots in my vision and felt like I was going to pass out and die.
I called the doctor office a couple days early to request the shot as I think I was experiencing symptoms of low B12. They gave me the shot and that evening I felt better again. This lasted all of two days and I felt just as sick as I did that day I called their office. I went back to talk to the doctor who said you only need it every month and the levels should go up. I knew then and there I'd have to go to a different doctor to get more B12.

I called my primary care physician with tears in my eyes (because I was so weak and sick I thought I was going to die, literally) and went into his office and begged for more B12 injections. By the way, I had tried another sublingual tablet prior to this office visit and again had a terrible negative reaction. It just made me feel crazy and sick.
My therapist said it was likely the sugar additive ingredients that did this, this one in particular was xylitol. She said she's seen it make others sick before, and many just can't tolerate them.

My primary care obliged and gave me intramuscular shots that I could give myself. He gave me cyanocobalamin, and I seemed to do OK. I took it more often than he prescribed based on a treatment protocol I found online. I went back to his office and requested methylcobalamin shots and that I could have them every-other-day for two weeks, then maybe once a week for a month then re-assess.

I haven't taken any shots in a couple days, and I already feel out of it. Confused, in pain (not sure if this pain is specifically from this, but I am wondering if it is...), fatigued, feel sick like I may pass out. In any event, I will give myself the last of the two-week every-other-daily dosings tomorrow morning of 1000mcg IM methylcobalamin.

My question is in regards to daily oral dosings. I am reading on this thread and another website (the Rose's website) that one can take 1000-2000 or more (up to about 5000) mcg of oral cobalamin (in either cayno or methyl, or others) every day and have just as good results, because regarless of the fact that if you have intrinsic factor or not, you will scrape just enough from a mega dose to get enough you need (1-10% of the pill).

My question is this - given I cannot tolerate sublinguals (and is this heard of? does anyone else not have the ability to tolerate sublinguals for some reason?), would I be OK to try an oral dose, one that is not sublingual but is rather swallowed, and later absorbed by the intestine? I do not know if I am missing intrinsic factor or not. That was my reason behind trying sublinguals. However, I found that for whatever reason I just cannot tolerate them.

I am so confused and disturbed by this. I do not know why my levels are low or where this came from and for how long I've had it. I have a range of strange things going on with my body, and I'm not sure how much is attributed to low B12 or is from other factors (recently stopped almost 10 years of antidepressant use, had some horrific adverse reactions to one of them, was on a mega dose of another that I shouldn't have been on, etc.).

I have a lot of strange pain and cracking in my upper back and joints, almost like fibro like pains up there. I have a lot of cognitive difficulties (forgetting things, feeling detached from reality, having a hard time focusing and learning new things), and I had many classic low b12 signs like pallor, heavy breathing, confusion, dizziness, low appetite, bleeding gums, greying of hairs (I'm 30!)and other things.

Any advice anyone could give me would be greatly appreciated. I am so glad I ran across these threads.

J