Pernicious Anaemia Society
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Return of symptoms

Hi all. I've been having injections for six weeks now, and have been very pleased with how my nerve pain has got less, but then this Friday, my carpel tunnel like symptoms in my right hand came back strongly overnight. I felt a bit scared, but wondered if my b12 had been used up by a bought of sciatica, brought on by me actually having enough energy to do some gardening. :)

I didn't expect a smooth continuous improvement but the strong return of symptoms was a bit scary. Symptoms are beginning to settle down again, but if any of you have similar experiences to share, I'd find that helpful.

Also do any of you find methyl injections more painful than hydroxy? I do.

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Hi Withattitude,

I use both types of Cobalamin to inject. The MCobalamin is much easier for me, there is no pressure, or feeling of the liquid going into the body. With HCobalamin, there is a sting and a bit of pressure, if that makes sense.

Injecting myself is much less painful for me than when the nurse does it. I go much slower when pressing the plunger in.

J

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Thanks for replying. It must be me ;)

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For me stress and worry exacerbate the return of symptoms. Stress uses up B12.

I supplement with methyl-B12 sublinguals.

Start a logbook of your symptoms, if you haven't already, to build some evidence for your Dr. You probably need more frequent injections because the B12 doesn't get recycled, you just consume it too quickly at the level of activity you are at. The better you feel the more you do and the more B12 you need.

Also supplement with B6, folic acid, daily multivitamin. I take TMG also.

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Thank you that's really helpful and makes sense.

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Can you tell me please.... what is TMG?

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TMG = Trimethylglycine. aka betaine (although don't get it mixed up with betaine hydrochloride - which releases hydrochloric acid). It's used for people with too much homocysteine in their blood, which shouldn't be a problem if your B12 is working properly.

I would really only recommend it for those with that problem as shown by a blood test. No point in taking extra stuff needlessly.

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Trimethylglycine. A form of betaine.

In the metabolic pathway, B12 sits at the intersection of the folate loop and the methionine loop. ( use google images and search for methionine loop to get a picture - it looks like two circles side-by-side). TMG provides a parallel pathway to B12 on the methionine side . It helps eliminate excessive homocysteine which is the amino acid that erodes, or contributes to the erosion of, the myelin sheath on the nerves.

Since I have some nerve damage, I want to try to repair it and reduce the further damage or undoing of the repair by any homocysteine build up at the end of the period just prior to my next B12 injection

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Fantastic reply, thank you! Looking forward to finding out more! x

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I could well be your nerves "waking up" as they start to heal. Give it a bit of time and come back to us.

Are you getting enough of the cofactors needed to metabolise the B12? A broad spectrum multivitamin and mineral supplement plus extra folate, potassium and magnesium at least is needed.

See how it goes and come back to us on it. :-)

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Thanks Denise. I'm taking all the cofactors, drinking coconut water for potassium. I'll post in a few weeks. This sight is such a great support.

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This happened to me with my pain. But now had injections for 6months and they seem to be taking longer for symptoms to return.

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Thanks for that it's helpful to know other people's experience. Glad you are feeling better.

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