Low B12. can this be caused by ms?

New diagnosis and before diagnosis
1

i had my blood results today which were all fine, apart from low b12 and slightly low iron levels (iron levels have always been borderline for me)

i’ll start from the beginning. I’m 30, female and have had neurological symptoms for the last 7-8 years. 7-8 years ago i had glandular fever and this is when i started to feel ‘electric shocks’. doctors couldn’t find anything wrong and said it was the virus working on me.

i’ve had these shocks every few months since then. no obvious trigger and would last a few days. i stopped telling the doctor because they always blamed it on my anxiety. even though i told them it was caused by movement.

i’d suffer from (what i thought were) aura migraines, where the centre of my vision would be blocked out, pain behind my eye which would last for 24 hour, but with no headache.

i’d get what was diagnosed as tendonitis in my arms, but there was never any obvious reason for it. i’m not an active person as i get very tired easily and my legs and arms get very weak and feellike i’m dragging lead.

3 and a half weeks ago i started to get the shocks again, which were knocking me off balance (nothing new), but this time, on the 4th day, if i was speaking an had a shock, i was slurring my speech. this hadn’t happened before so i went to the doctor, who sent me to a&e. They took bloods and put me on the list for a MRI, which i will probaby have to wait another 4 weeks for. since then, the shocks have lessened,but my left leg is very weak. when i’m walking it feels like someon has come up beind me and bumped into the back of my knee. i’ve got a visible limp and have fallen 6 times (3 with baby in my arms, and two at the top of the stairs!!). my left arm was really sore yesterday, like i had tendonitis in the forearm and upper arm. my ring finger, pinky and outer side of hand go numb and tingly sometimes and i always assumed it was (another) pinched nerve.my left hamstring keeps kinda cramping (weird sensation) and the same with my left calf. my foot went into a cramp today which was just agony!!

was told to get more bloods taken and went back today for results, which showed the b12 deficiency. been prescribed 300 mg a day and repeat bloods to see if it makes a difference to my levels. if it doesn’t, then means my body isn’t absorbing b12 properly.

My hands have been gradually losing dexterity for at least 18 months. i’ve noticed it more and more over the last 6 months. they just don’t work as well anymore and it’s een frustrating me so much. i have 3 girls and takes so long to plait their hair. i looked down a few months ago and thought (jeezo, when did i start holding things like THAT?!) seems i’ve been changing the way i use my hands to compensate without realising.

b12 deficiency would account for my neurological symptoms, but would i be having these off and on symptoms for the past 7 ish years (possible relapses) or would it be continual?? could low b12 be a symptom of ms??

sorry if this doesn’t really make much sense. i have serious problems wit my concentration, memory and recall (ridiculous over the last 3 weeks) and it has taken a while to write this. i know nobody will know until the MRI, but just worried about the future

2

Well, that is quite a list and I can understand why you are concerned. I am not qualified to comment medically but clearly there are issues here. I can tell you that the MRI may or may not show something up, in itself it not conclusive. In my experience things will emerge and fairly slowly at that. It is very easy to self diagnose, try not to, don’t dwell on it too much, try not to worry as I say it will emerge and the strong liklehood is that you do not have MS. John

3

Hi Kisywisy,

What is very positive about your doc, is that he’s being very thorough about your B12 issues. B12 is a serious deficiency. You didn’t mention how low your levels were, but B12 deficiency can be responsible for many and varied symptoms.

There is a tendency to always think its the worst, and I’m the worst culprit for this. In the end it can just send you round in circles. You know you have a B12 problem. My advice would be to try and understand more about what this can actually do to you. I’m currently at the position of having a low normal B12, and the neuro has said I have a macrocytic anaemia without B12 deficiency (which I don’t entirely get). They are still looking for causes of the nerve damage and muscle wastage that’s begun. My biggest concern at present is that the medical community don’t consider low normal B12 levels as problematic, which apparently means that many people are misdiagnosed.

Try to go through this one step at a time.

Take care

Astro

4

Thank you for your replies :slight_smile: I may sound silly for asking this, but I can’t find an answer online anywhere. What is the difference between b12 deficiency and ms?? The only answers I can find are the same definitions everywhere; b12 - a cause for symptoms, ms - a description of symptoms (I’m paraphrasing). This does not make thing any easier for me to understand. My left leg is still useless, my left arm is just getting weaker and now it’s up my shoulder, stabbing pains under my left side of jaw and stomach cramps for the last week (feel like my stomach is being squeezed). Cramps come and go in all those places. I feel so broken. This is the worst it’s ever been and lasting so long. What am I supposed to do?? Do I go up to the hospital and ask what can stop these pains?? Should I report all symptoms or just wait until the MRI?? (I’m not one for going to the doctor since I was always made to feel like a hypochondriac) I suppose there is no use listing all these as low b12 mimics ms. What I’m worried about now is (even if it’s low b12) that the damage that has been done to the nerves to cause me to have this ridiculous limp and weakness on my leg can be reversed at all?? Will my hands ever go back to how strong they used to be?? Am I always going to be so confused I struggle to have a full conversation?? Will b12 give me my words and memory back?? If it’s ‘just’ low b12 and has been at the stage where I’ve been getting neurological symptoms of and on for years, am I doomed to be the (seemingly) stupid, limping mess forever?? Sorry, pity party at my house at the moment :frowning:

5

Hi first of all MS does not cause a B12 defiency but B12 defiency can look like MS. I have been having symptoms for years and years. MS has been suspected but cannot be confirmed due to not enough MRI evidence and a negative lumbar puncture. My B12 was lownso have started an intense treatment of B12. M numbness and pins and needles have gone. Strength in my right arm and leg has improved but I have spasticity in right leg and that does not want to shift. I think it has been there too long. I first went to nuero in 2005, then in 2011 and only in 2014 has B12 been identified as a problem. My walking was 90% normal in 2011 but now I definately have a spastic gait.

Moyna xxx

6

[quote=“Moyna”]

Hi first of all MS does not cause a B12 defiency but B12 defiency can look like MS. I have been having symptoms for years and years. MS has been suspected but cannot be confirmed due to not enough MRI evidence and a negative lumbar puncture. My B12 was lownso have started an intense treatment of B12. M numbness and pins and needles have gone. Strength in my right arm and leg has improved but I have spasticity in right leg and that does not want to shift. I think it has been there too long. I first went to nuero in 2005, then in 2011 and only in 2014 has B12 been identified as a problem. My walking was 90% normal in 2011 but now I definately have a spastic gait.

Moyna xxx

[/quote] Thanks for your reply. Sorry you’ve not had a definite answer for so long. I keep reading that some people with ms have low b12 because so much is being used to try and repair the nerve damage. This is what is worrying me. Low b12 is worrying because of how long I’ve been getting these neurological flare ups. When you say spastic gait, can you describe your gait for me?? Is it a weak leg or is your leg cramped when walking, causing a limp?? My knee is now stabbing sometimes while I walk, but I think is a result of how weak and kinda floppy it is when I’m bearing weight :frowning: I just want this to stop now. It’s been almost 4 weeks

7

Hi, My calves and quads are tight making it difficult to flex foot and knee when walk. I see people with strokes and that is me except for the bent arm. My leg does no really feel weak.

Moyna xxx

8

A quick update. I was admitted last night and Today I have had a chest X-ray, ct scan and lumbar puncture. They are thinking it’s possibly a demyelinating disease. CT scan in clear and no problems detected there. Spinal fluid is clear and no sign of bleeding or infection (by the naked eye), but will take a few weeks to get the results back. The reflexes on my left leg aren’t as strong as my right and weakness in my left arm (eyes shut, arms out front, my left arm wandered a little). Seems to be my left thigh that has weakened. From my descriptions there is a good chance that my ‘aura migraines’ were possibly related to this (ON??) My MRI is scheduled for next week (the letter must have been in the post) and the consultant at the hospital is wanting me to see a neurologist next week. I’m glad I came down to a&be last night as it’s been very productive. The LP was nothing like I thought it would be. No spree than getting blood taken. Still, it’s only been an hour. I fully expect to have the worst headache of my life…

9

That you’re getting closer to some answers is a good thing but I’m sorry you’ve ended up in hospital.

When I had a lumbar puncture I had to stay completely flat for an hour afterwards, and drink a jugful of water (have the nurses who tell you to do this tried drinking while lying flat?!). The doctor who did my LP advised drink plenty (aim for double your normal amount) and plenty of caffeine). I failed on both counts and got a horrendous headache that started the day after and lasted several days. I sincerely hope you avoid it, I wouldn’t wish it on my worst enemy.

10

Oh I really hope I don’t get the headache. Hubby is back at work on Tuesday so really can’t handle that and the kids :confused: Neuro appointment will take about 6 weeks so I don’t know why they told me I’d see him next week. At least by then all the results will be in

11

Had some encouraging news last night. A friend messaged me and told me his wife had b12 deficiency after their first child and made a full recovery. She had lots of leg cramps, which went away after 3-4 months of treatment. I really hope it’s ‘just’ b12 deficiency and I go back to normal soon. My lower left eyelid has been twitching all day, which is annoying. My left leg muscles are still twitching and now my right is starting to twitch. Good news is that I seem to be great after the LP. Just back pain, but not unbearable :slight_smile:

12

Sorry, just to add: The doctors said that ms CAN cause low b12 due to more beig used up trying to fix the demyelination. So can other demyelinating diseases, so that answers that question.