Pernicious Anaemia Society

New to this, b12 and folic acid low, neuroligical problems

Hi Guys

Im new to this forum as over the past 10 weeks I have went from a normal girl to one that can barely walk unaided at times. It started off that I was unwell for two months and kept having some sort of infections, possible UTI. This then developed into having a sore back (it wasnt that sore) for a week and then all of a sudden one day i could barely walk. I was getting constant pins and needles down both my legs. I have EXTREME fatigue and i do not exaggerate this.

This obviously really scared me and I went to A and E, they put it down to a UTI. I ended up paying privately (from UK) and seeing a neurologist as I couldnt even raise my legs off the bed and I had to come out of work. He did some reflex tests and various other ones and he said they were abit jerky and off and that there was some nerve damage obviously done. I got a full spinal MRI done and it came back perfectly clear. No signs of inflammation or disc problems. I showed him my blood results and he seen that my folic acid was 3.5 (I was already on tablets for this) and my B12 results were 275. By reading on this forum that doesnt look very low but the nerulogist said that with the symptoms im having that they were low enough to need treatment so im getting injections.

He was very sure that this is the problem and I was finding it hard to believe that this could really cause this, but reading this forum seems to show that it can! The neurologist has sent me for a brain MRI and im waiting on getting a nerve conductory test done, this is more to give me piece of mind that its nothing more serious. I am/was worried that I could have M.E which my sister has but reading this forum helps abit thinking that it could just be the b12 but im stil not convinced.

I havent seen much difference with the injections yet but its only been 2 weeks at getting it twice a week.

Has anyone any advice for someone like me who is new to all this, and if theres anything that I can do? Have you been able to hold down a stable job with being like this and does it go away? The neurogist said it would take a couple of months but assured me that that would be it.

Thanks in advance!

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Hi tattoogirl are you in the UK? If so you should be getting loading doses of B12 every other day until there is no further improvement per the N.I.C.E Guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

It is also important that your Folate level is monitored as this is essential to process the B12.

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.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels are "bumping along the bottom of the range.

Are you still taking folic acid tablets?

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

Do you have any idea why you came to have low B12? What is your diet like, what other medications are you on, have you had gastric surgery, are you over 60, do you have digestive problems and so on?

I am not a medically trained person but I was a walking "zombie" when I was diagnosed with P.A. (a form of B12 deficiency) 46 years ago and I'm still "clivealive" and over 75.

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make a full list of symptoms and monitor progress against all of them - neurological symptoms can take a long time to clear, but other symptoms may improve quicker so it will help you to reassure yourself if you focus on what actually is improving.

Unfortunately it really is a question of time and things can actually seem to get a little worse before they get better.

Are you still taking the folate supplements.

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Hiya

Yes im in the UK. So should I go back to my doctor and ask to continue getting b12 injections more regularly? As at the minute im getting 2 twice a week but that will finish after next week. The consultant actually told me to get it once a week for 8 weeks but the doctor changed this. How would I approach it with my doctor to get the injections more regularly? What does the N.I.C.E Guidelines mean, is it a legal requirement?

Yes I am continuing taking my folic acid 5mg once daily. I have to get my bloods done in a few weeks again to check my folic acid levels (3 months after taking the tablets)

I just rang the receptionist and of course she said your b12 levels are completely normal.....but sure what does she know.....

I have no idea why my b12 was low. I suffer with a binge eating disorder so my eating can be all over the place sometimes. I do eat good normal meals with meat and veg.

I am 33, I am on medication for anxiety and depression. Fluexotine and Mertazapine but ive been on them for a long time. I have IBS on and off but havent had it in a while. Mainly sickness ive been feeling.

I am off work at the minute and at risk of losing my job so I just want to do all I can to get a quicker recovery.

Thank you and thank you for your responses

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Everyone has given you very good advice so far.

A couple of thoughts occur to me.

1. Has your sister ever had her B12 measured? ME is a vague diagnosis quite often and your sister may also have B12 deficiency as there is often a strong family history.

2 She should be checked and you imply that she is much worse than you. If that is the case it needs to be taken very seriously by her doctor and yours.

Four generations of my family were known to have been affected and I've just discovered one of my grand daughters also has the problem making five generations. My niece has recently been diagnosed and suffered from severe ME some years ago. It lasted for several years and I suspect now that it may have been an early indication of Pernicious Anaemia.

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Yes my sister gets b12 injections every 2 weeks. Yes she is a hell of alot worse, she uses a mobility scooter and lots of other problems. She has had M.E for ten years and had lots of investigations.

Thanks for the message :-)

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I hope your sister gets all the co factors to make b12 work as well and you too.

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how did you make out? Feeling better?

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Hey, I feel that I can walk faster rather than trying to take step by step but i get extremly tired quickly and my exhaustion is unreal. I have now developed pains and pins and needles down both my arms. I had a nerve conductory test done today and it came back normal so im very confused. Starting to feel really low about it all :-( So basically Im none the wiser.....just have to go see my neruologist again.

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Hi tattoogirl,

I too had serious mobility problems earlier this year, I was in a wheelchair for awhile and had to use an indoor potty, (commode) I had a neck brace and body brace. I then was able to use a two wheel walker and then a 4 wheel walker outside. It's been a pretty amazing journey. My back used to be so sore all the time. I had know idea it was issues with B12. I read somewhere that the symptoms of B12 deficiency can affect your spinal cord. I too have been to have an MRI scan with nothing conclusive except some incidental findings not related to my problem (benign hemangiomas, whatever that is). It's not much fun being so fatigued, I understand that too. I couldn't drive, but I have been lately.It's not completely healed because I still experience numbness (not as severe as it was), and I don't know if that's nerve damage? Do you have left sided weakness? I do. I have regular chiropractic and it does seem to help.

I'm new to this forum as well, and I'm not a doctor. Hope yours and my doctors can get to the root of your problem.

Just commiserating with you.

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That sounds awful, what I have is nowhere near as serious as that but its still really dibilatating. I can drive short distances at the minute but i only do it on occasion. But I will try to do it more and more to get some normality back. No my weakness is equal on both sides. Except my arms, my right arm/hand is weaker but i think thats because that is the arm that I use most as im right handed.

So did they say that your problems were all down to low b12? I find that crazy as they are so extreme, abit like myself. My b12 was 275 which is normal low so i really cant see that it is whats causing this. But hopefully i get better answers soon.

Hope things start to improve with yourself :-)

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