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Pernicious Anaemia Society
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Trunk Neuropathy Question from Newcomer

I was found to have parietal antibodies about two years ago, and therefore diagnosed with autoimmune pernicious anemia, even though my B12 was in the low normal range and MMA was fine. The B12 had gone down 50 points in a year.

I'd had increasing neuropathy for a few years by then. I also had some twitching and pulling in my ribcage on the right side. This eventually led to having my gallbladder removed. I did not realize then that the stones that were discovered were very small and made of bilirubin, and suspect now there was no need for that surgery but it's gone now. The nature of the stones led my naturopath to do more testing. The abdominal pulling, I realize now, is probably muscle pulling due to neuropathy.

I took loading doses and since then the bad brain fog has gone away and I have much more energy and don't look yellow any more, and the neuropathy in my feet changed but did not go away. However, the pins and needles and muscle cramps have spread to my entire abdomen and ribcage area. It is almost unbearable at times.

I am in the U.S. and purchase my own methylcobalamin, can give myself shots as often as I please. However, my neurologist said my B12 was too high (over 1200) and I should inject much less often because too much B12 "can cause problems." I don't plan to continue with this neurologist for various reasons and am loathe to start the grueling process of getting in with a different one.

I don't want to cause more problems for myself by injecting too much, but wonder if I should start injecting more frequently to see if I can stop this symptom. The current neurologist said my neuropathy was due to bulging discs and dismissed the pernicious anemia as an issue in the trunk. She said there was no way to test for neuropathy in the abdomen and that I should stay active and take turmeric. Something seems amiss there.

I know this is neuropathy from the way it feels and because the muscles behave the same way in my trunk as they do in my legs. I am willing to start more injections but also scared to create more problems. Now I inject once a month.

Any suggestions from anyone with a similar issue? Thank you.

G

3 Replies
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Hi gnnmi Some vitamins are dangerous in large quantities. For example, too much vitamin A will kill you (which is why you should never eat polar bear liver!), and high concentrations of vitamins D, E and K are also harmful. But these vitamins are fat-soluble, so they build up inside your body.

Vitamin B12 is not fat-soluble; it’s water-soluble instead so you cannot "overdose" on Vitamin B12 as any "excess to requirement" is excreted via your urine.

Do you know what your Folate level is?

My understanding is pretty basic but it is this: The three components that the body needs in order to create red blood cells are iron, B12, and folate. When you're low on any of the three, your body can't use just the remaining components to go on making cells, so those components continue to exist in the body but not get used. (This lack of production causes anemia.)

When you get more of the missing component, the body begins making more cells.

Since it is making the cells from all three components, all three are being pulled from. So it does make sense that, if you were low enough in B12 to have become anemic, and you've now been given B12, your body is trying to catch up on cell production and is drawing on the folate and iron in your body for that purpose.

I'm not a medically trained person but have had P.A for more than 45 years and I've supplemented with folic acid and ferrous fumarate tablets every day for more years than I can remember to go with my three weekly injections of B12.

I wish you well and goodnight from the U.K.

Reply

Thank you very much, Clive

My folate and iron are in normal range, and the lowest my b12 has ever gotten is about 450 or low normal.

The diagnosis came from a positive intrinsic factor sign. Self-injecting has not stopped the spread of the neuropathy from one leg to another, and from there to my ribcage and arms. This is why I'm wondering if I need to step it up.

Another question: Is it possible that the intrinsic factor result was a false positive and I am looking in the wrong place for a solution?

I truly appreciate your assistance.

G

Reply

No, and thank you Eaoz for the information. I am learning a lot here.

Reply

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