Hi there
I was diagnosed with MS a few months ago, the diagnosis having been clinched by a Lumbar Puncture. Having done my reseach, including reading many of the helpful posts on this forum, I asked my GP for a blood test for Vit B12 along with one for Vit D3. The first B12 test came back as deficient with a level of 135 so my GP asked me to take a 2nd test to look at intrinsic factor. Have just phoned the surgery and been told this is normal - a level of 80. I do not think my diet is low in B12 so if it is not my diet and not a problem with absorption caused by dodgy intrinsic factor, what is causing the B12 deficiency? Any ideas anyone before I speak to my doctor on Thursday? Am due also to see my MS Nurse on 2 April - will she be able to advise on thi?. Will I still be offered B12 injections? Have been getting a lot of tingling lately which I hoped might be alleviated by B12 injections so will be disappointed if she says these are not required.
Hilary
What is causing the B12 deficiency? Don’t know - but I have it too, and so do a fair number of us. I’m on the injections - again, this is common. I have no idea whether the MS population has a higher-than-average incidence of low B12, or whether it is just that it is a standard thing to test for when people are having neurological problems, so we are just more likely to know we are deficient (but this might just be my ignorance!) My GP took the view that the injections certainly would not do any harm, and they might help, so that’s what I get.
Alison
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Hi Hilary,
I’m B12 deficient too, meant to ask about my intrinsic factor and keep forgetting!
One of the functions of B12 is to help with nerve repair, so it makes sense to me that people with MS would use more of their B12 stores. I don’t know this for sure but it makes sense to me anyway!
Hope this helps.
Lynn
At my first onset the Neuro asked my GP to arrange a course of B12 injections “just in case” as well as a test for b12 deficiency. It turned out that I was not deficient, but I did appreciate his being thorough.
Geoff
Hi Hilary, Before I was diagnosed with MS they thought all my problems were due to low B12 (level 133). I started the injections, but this didnt help my symptoms. I was on injections for a year, but now my GP says my level is acceptable and has stopped them. She said the level should remain stable , but Im keeping an eye on the level as it keeps dropping each time I have it tested. In 10 months my level has dropped from 800 to 340 and am due to get it tested again tomorrow. If it shows it has dropped further I will be asking to be started on the 3 monthly injection and I will not come off them. Im not sure why, but have heard a lot of people with MS have low B12. My intrinsic factor is normal too and I have a healthy diet. Heather
Do google ‘Could it be B12’ - An Epidemic of Misdiagnoses. Lots of facts to help us with MS. l have the book - bought it from amazon.
Also - Dr Chandy’s site about B12. There was a BBC programme about this GP.
F.
Thanks for your comments everyone. Very helpful.
Take care
Hilary