Before being diagnosed with Secondary Progressive MS age 59, my neurologist prescribed 8-weekly B12 injections for my neurological symptoms. After MS diagnosis I was told the B12 injections weren’t related to MS and I should now ask the GP to monitor my B12 levels. I was never deficient in B12, but had low levels. The GP said they would change the injections to 12-weekly injections and that there was no need to check levels, just continue for life.
After trying several times to have my levels checked I’ve now managed to book a blood test prior to the next injection to hopefully check my levels to see whether my levels dip very low by 12 weeks and whether I need to return to 8-weekly injections. (I’ve had to arrange this myself as I’m curious as my mobility dips, eg. legs get weaker, before the next injection)
Does anyone else have B12 injections 8-weekly or 12 weekly and do you find any improvement in your MS symptoms?
I’ve found GP’s are all different in their opinions regarding B12 - some will say continue without testing, some even say I don’t really need it although because I’m at the lower end of the scale perhaps I should anyway. Neurology still say ask the GP!
I haven’t felt any major improvement in my energy or mobility at all after an injection, but I can feel a little weaker just before the next 12-weekly one.
I don’t have injections but did find out my B12 level was on the low side. I now take a B12 spray. Up to 4x a day, sprayed onto cheek or back of the throat. Each spray is 300mcg so it’s a fairly high dose. More easily absorbed than a tablet and much more tolerable than an injection. Made by BetterYou, you can buy it online or in Tesco (and other places).
Don’t know if it works as such, in amongst all the other stuff going on, but levels are normal now. Do I feel different though? No, not really.
I wasn’t eligible for any injection my B12 was above the lower limit. So I take 1000mcg of sublingual B12 daily and it helps mainly with muscle strength.
I was told before my MS Diagnosis (18yrs ago) I was B12 deficient, I had start up of 6 injo(one after another). A month later I was diagnosed and not had an injection or been spoken too about B12 since… it seems s something I have thought to bring up lately. Sorry not much help answering your question! C x
Thank you for your reply. There seem to be so many different opinions from the medical profession regarding B12 injections. I’m still battling with my GP as to whether I need my jabs every 2 or 3 months. They WON’T do blood tests to see (although one or two GP’s do think it’s a good idea). I really feel that there aren’t any rules set up for giving B12. They seem to have a better idea over in the USA which I’ve only discovered by using ‘Google’, but I think the answer over here would be to see a Haematologist at the same time as a Neurologist before diagnosis (which they do in America).
Yes, B12 injections every 3 months (used to be every 2 months). I was originally low in B12 before the MS diagnosis although this wasn’t discovered until my walking deteriorated and neurology thought this was the cause.
Not sure if the injections help, but seem to a little.
Might help? I take Vit D, B12, plus Vit C from time to time .
Also , from time to time, Magesium tablets which help with muscle and nerve function- I think there are quite a few on the forum who also take Magnesium or use magnesium gel.