Help with muscle twitching and B12 levels

[Samantha7070]

Hi I’m looking for help ... have had muscle twitching pins and needles off and on for over two years. I went to see a neurologist who told me to go home and do breathing executives. I started getting treated with B12 even though my levels have never been low but they really help that and boosting my magnesium which has always been low. I went through a 6 months period of not taking my B12 shots and magnesium and now I have had continuous fasciculation’s you can see muscles on my legs move continuously, twitching on my spine neck head and cold pin pricks around my head intermittently, worm like muscle spasms all very alarming... my doctor says my b12 is above 1000 and my homocysteine and urine methomycalate levels are okay.. when I take the shot however it seems to settle for a day or two and then comes back with a vengeance I am confused should I continue taking the B12 is it dangerous to if everything is ok and my B12 quite high?am I doing more harm than good any help would be really appreciated it’s quite scary?

[Gambit62 Administrator]

I can't really give you any absolute answers but the following may help

There is a lot that isn't understood about how B12 is metabolised once you are on B12 shots. Serum B12 just isn't a good guide to whether you have the B12 levels that are right for you - the PAS did some studies a while back and in the sample group they were looking at patients reported on average needing serum b12 levels of 1000+ in order to feel okay. There is some research going on to try and figure out why this is the case.

B12 is used by a lot of processes that go on in your cells and homocysteine and MMA look at products from two of those processes as a way of gauging whether they are going on okay but that isn't going to tell you what is happening with other processes so it may not tell the whole story.

Reality is that the best way of treating a B12 absorption problem and determining the frequency of treatment is to go by symptoms at the moment, though the overlap with symptoms of other conditions can make that a little more complex.

[Samantha7070 in reply to Gambit62]

Hello how lovely if you to take your time to get back to me I have been very anxious and not sure whether to inject regularly although I feel better when I do so this help a lot ❤️

[Sleepybunny]

Hi,

A few B12 links

Two B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Films and videos about B12 deficiency and PA

PAS conference 2019

pernicious-anaemia-society....

Films about b12 deficiency

b12deficiency.info/films/

I am not medically trained.

[Samantha7070 in reply to Sleepybunny]

Thankyou so very much for your kind and thoughtful response I so appreciate it ❤️