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Pernicious Anaemia Society
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Neurological symptoms for 2.5 months, negative on all investigations and vit b12 levels 364 pg/ml

I am a 23 year old normally completely healthy women and I would appreciate some advice regarding my vitamin b12 levels.

Long story short I am living in Greece for the summer and after 4 nights of heavy drinking at the start of the summer I started to experience mild tingling and numbness on hands and feet. This spreaded up the way to full arms and legs symptoms. I went to the doctor straight away and since then have had 1 full blood test, visited a neurologist a few times, MRI of head and neck and vit b 12 test. Doctors first stated this was all due to alcohol and will get better.. when it wasn't I returned and had these further investigations. All tests were completely normal and I have been told there is no cause for this peripheral neuropathy and they don't know.

I know alcohol and diet can all affect vitamin b12 levels therefore when I wasn't getting answers form the doctors I took neurobion (a vitamin b1, 6 and 12 supplement once a day for over a month maybe 9 weeks ago). I then took it twice a day for 10 days after going to the pharmacist and a different pharmacist recommended this frequency per day. I noticed my symptoms improving after taking the higher frequency of tablets. I am now taking this vitamin still twice a day with approval and advice from the neurologist 3 days ago. Currently my symptoms are still strange tingling in mainly the legs but sometimes in my hands, my legs and arms easily getting pins and needles and numb in certain positions e.g. In sitting or lying but this doesn't stay but it takes much longer to return to normal than when I used to get a 'dead' leg from a compressed position. Also small twitching in arms and legs. My vitamin b12 levels right now (measured for the first time on Monday - 3 days ago) are 364 pc/ml with their lab normal levels being 300-900. I think my levels will have been affected by my supplementation of neurobion therefore could have been much lower when my symptoms were worse (2.5 months ago) if this is the cause.

I would like advise on whether anyone with experience or expertise believes these levels are low or not? My main concern is not getting the vitamin b12 injections because I fear that these neurological symptoms could either stay or get worse and maybe this could be prevented if vitamin b12 is the cause.

The neurologist recommended taking neurobion 2x a day for one month only. She said only treated with an injection if it is very low.

If anyone can give advice I'd really appreciate it

Thanks

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Hi Hm1212 was your Folate level tested and have you been supplementing with it whilst taking the B12? It may be shown as B9 or folic acid.

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Thanks for your reply! No they haven't tested my folate but I forgot to mention one Greek doctor I saw from the local medical centre (I've seen a few) decided to give me folic acid and vitamin c prescription to take for 2 weeks.. I did this and my symptoms of very heavy heavy legs did improve.. this was over a month ago but they have not tested anything. They are very resistant to test me for anything. My blood test showed ever so slightly lower than Normal RBC level which made him suspect to try folic acid and vitamin c supplement to help with absorption. However I did still experience neurological symptoms after the folic acid treatment so they said don't take anymore.

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There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Also it is not uncommon for some neurological symptoms to appear to get worse before they get better as the B12 starts to repair the damage done to your nervous system.

I'm not a medically trained person but have had P.A (a form of B12 deficiency) for over 45 years and personally I have taken 1 – Folic Acid 400μg tablet every day for more years than I can remember as I have B12 injected.

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

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Thankyou clivealive For the reply again.. yes I understand this and I think a UK doctor would appreciate this as well and test these minerals/vitamins.

Thanks again

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Your b12 supplement prior to your blood test will have affected the b12 result.

Could you ask the neurologist for a trial of alternate day b12 injections to be reviewed after say 3 weeks and see if it starts to improve things?

You could argue that it is cheap and as long as you are not allergic it has no worrisome side effectd. and if you are actually b12 deficient it could prevent neuro damage from worsening and maybe reverse any that is already happening.

I suggested to my doctor that, although it might not be the answer, it was surely worth a try given its relative harmlessness and cheapness and the difference it might make if it did help

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