Cramps and tremors

[MALP]

About 8 weeks ago I started to experience muscle tremors when exercising and muscle spasms, my hamstrings completely seized for a while and I was in a lot of pain. Since then I saw my GP, blood results showed B12 level to be borderline for treatment, but because of the neurological symptoms and family history for PA my GP was prepared to treat me. 3 injections a week for 3 weeks began to improve the worse of the symptoms, then we cut down to 1 a week and symptoms returned over Christmas. Decision was made to go up to 2 a week which has happened past 2 weeks. Meanwhile tremor in arms and upper body got worse (I had a nasty virus too), GP has prescribed beta blockers for tremor as pulse was also racing, it's helped a bit. Has anyone out there experienced similar symptoms, do I need more injections. I've heard methylcobalamin is better with neurological symptoms, but my GP says its not available in UK? Anyone know a safe, reliable supplier in UK? Has anyone experienced similar symptoms and made a full recovery? I'm a Yoga teacher, so to say this is impacting my livelyhood is an understatement!

[Lisahelen]

Hi i had similar symptoms pre diagnosis, ( along with many others!) tore muscles willy nilly. Found that hydroxo hasnt as yet done much good for me(but still early days-1injection past loading). I wasnt prepared to wait yet another 3 months for next dose as i was still very symptomatic. I was also put on a beta blocker, with same result as yourself.

I use b12 patches-methyl, and cyan drops and methyl spray which seem to do the trick. Patches online the others from well known health food shop.

Used the patches every 3/4 days originally now weekly or if i have been 'overbusy'. Drops and spray as and when i feel i need a boost.

I also have a banana, a multivit and 2 high dose b12 tablets daily.

Wouldnt say its a question of 'full recovery' but keeping the symptoms at bay for many with b12d. There are so many people who use so many different ways to keep it in check that unfortunately it is a bit of a suck it and see principal of what works best for each individual. I personally couldnt tolerate the yarrows methyl lozenges that many use to good effect, as they made my mouth quite sore, but i will give them another go in the future.

[fbirder]

Your body should easily be able to convert hydroxocobalamin to methylcobalamin. Unless you're one of the 7% who have a genetic mutation that affects the methylation process. Taking Methyl Folate (Metafolin) should plug the gap in the methylation cycle.

It's a good idea to take some form of folic acid supplement anyhow. The Methyl Folate is, in my opinion, the best choice.

If you want to try methylcobalamin then you can buy sublingual lozenges or sprays, or skin patches. All these will be absorbed via routes other than the gut, bypassing any absorbtion problems you may have there.

It's great that your GP is so flexible about treatment frequency. So many refuse to do anything more often than once every two months.

Recovery can take a while (them nerves don't grow back immediately) so keep at it.

[Gambit62 Administrator]

It is only injectable methyl that isn't available in the UK - same for other types of cobalamin - none of the others are controlled substances. Although intramuscular injection is the most efficient way of getting B12 into the body there are lots of other ways - like the sprays and patches suggested below. These work for some people and not for others.

Hope you find something that works for you soon.

Think you should go back to your GP though as it doesn't sound as if he has quite followed the BCSH guidelines - which do recommend a review after 3 weeks from a practical standpoint - but the underlying recommendation is continue with 3xweek until symptoms stop improving.

Had your symptoms plateaued at 3 weeks or were you still seeing improvements?

[MALP in reply to Gambit62]

I was still improving I think after 3 weeks, it was only when we reduced to one injection a week that it all went horribly wrong. I'm actually feeling a little better today, a bit stronger and less crampy, have also been taking 5000mg of sublingual B12 daily. Not sure if tremors are related to racing pulse or B12 deficiency. Am taking the beta blockers still, but they push my blood pressure low which isn't great either. I'm curious to know how long it takes for the nerves to repair themselves? There seems to be a Doctor in Durham who imports methylcobalamine for injection, I have emailed him but not yet got a reply.

[Gambit62 Administrator in reply to MALP]

Unfortunately there aren't any rules on how long it takes nerve damage to correct - and if the deficiency has been left too long it can be irreversible so you could end up with some symptoms never fully disappearing.

Think you are probably referring to Dr Chandy -

You can order the B12 using the b12d.org website

b12d.org/

You need to join as a member and log in. The members home page allows you to request methyl B12