B12 symptoms

[Sarahmeacock_91]

Hi, wondering if anyone could help. I have been getting lots of symptoms lately such as : pins and needles in hands and feet, tiredness, muscle pains, memory trouble, sometimes feel like legs are like a dead weight when I got my b12 tested it come back 184 so they said just slightly under I told the doctor google said when you have low b12 you can have these symptoms my doctor said if it's just under it would not cause you to have any symptoms so they have now made me worry it's something else. Has anybody been just under and had symptoms? Thanks Sarah

[Amandasullivan12]

Im not sure but ive been getting numbness in my foot n tingling in my hands im so worried what it could be ive got docs on the 14th but am pettrified ive got ms or something i shouldnt of googled worst mistake i made

[fbirder]

You doctor is wrong.

It is possible to have the symptoms of a deficiency even if you are in the ‘normal’ range. This NHS document (which uses a different assay, therefore a different normal range) says...

B12 levels just within the normal range can lead to symptoms

hey.nhs.uk/wp/wp-content/up...

[Emmapemma]

Seeing as the b12 test is not accurate and possibly only 10% of the b12 in your serum is active b12 they should always go on symptoms. Go back and request intrinsic factor antibodies test (which also only 50%accurate) and ask to try b12 injections to see if it helps. Good luck

[Sarahmeacock_91]

Hi all thanks for the advice great help they have started me on injections anyway had the loading doses then have to wait 3 months for next ones so I'm due that in Feb. Loading doses haven't made a difference. Doctors have just terrified as sending me for brain scan today checking for ms and silly me did the same and googled it and now I think of nothing else but my doctor and neurologist both we're adamant it's not the b12 but my auntie thinks it is x

[Cherylclaire Forum Support]

I had a brain scan, Sarahmeacock_91 .

I was diagnosed by GP first as B12 deficient, just under their range, and later as functional B12 deficient, because blood swimming in B12, but very symptomatic and MMA raised. She sent me to the neurologist, who then ordered some tests: electrical nerve impulse tests on hands and feet because of tingling, numbness etc.(large nerves all fine) and brain scan because of poor memory and concentration, mood swings, sensory overload etc (brain fine too).

B12 deficiency, whatever the cause, can give you some real problems. Sometimes there are long waits for these consultations and tests. Meanwhile, really don't worry or focus on the possibility that it's ms. Although my neurologist listened to me, he did, rather surprisingly, tell me he didn't know much about B12 deficiency ! My GP sent me there in the first place because she thought my problems had taken me beyond primary care, and needed an expert ! So both your GP and neurologist might be unfamiliar with quite how widespread and devastating B12 deficiency symptoms can be.

The people who really know and understand this condition are the people who have had to live with it for a long time - and, sadly, often have had to make their own way by research, trial and error in order to do so. They are on this forum, and they have helped me immeasurably over years.

[Sarahmeacock_91 in reply to Cherylclaire]

Thank you made me feel a lot better, good to talk to people in similar situation to me. Being only 27 is was a major worry to me especially when the doctor said symptoms like yours we look at ms so fingers crossed it is just the b12 i never realised it could cause such an impact seen so many people saying how bad b12 is and how it effects here's hoping my scan goes well later. Thanks again Cherylclaire

[Cherylclaire Forum Support]

Yes, you are young, but often people come on here talking on behalf of their children with this condition. Age alone would not rule out B12 deficiency at all. Have you talked to family about whether this is a hereditary condition ?

Although we are all different, it took many months for me to even feel that I was being injected, let alone feeling any effect. At my worst, I started to think "Maybe they are just pretending to give me the injections": this was because my GP had restarted my loading injections and I was getting 2 a week for months, much to the concern of the nurses administering them - some very reluctantly! How can you tell what they are doing, when they are injecting the back of your arm ? The first time I actually felt something, I was delighted ! Later on, when put back on 1 every 2 months, I had to teach myself how to inject, as none of the nurses would teach me.

Will be thinking of you and wishing you well.

[Ritchie1268]

Hi Sarah.

To try to reassure you a little if I can.

I'm by know means medically trained but, had the same symptoms as you are experiencing, plus others.

I was diagnosed with Folate & B12 deficiency along with PA.

The loading doses made know difference at all & it wasn't until a few days after my first 3 monthly injection that I noticed any difference. This sadly only lasted around 3/4 days, the same again with the last one in October.

Also, after reading & researching, I've read that many people do get misdiagnosed with MS! See this link healthunlocked.com/api/redi...

Hope you get sorted soon. Good luck.

Ritchie