Muscle spasm

[NOTI1]

I si about every 2 weeks now (symptoms improved but still there). Over the last few weeks, my pins and needles feeling is worse again, I have developed pain and wierd feelings in my right big toe and now have right side facial twitching. Does anyone else experience these?

[MrsTuft]

You probably need every other day injections for neurological symptoms. And check folate, ferritin, etc.

[deniseinmilden in reply to MrsTuft]

Thank you for saying what I was going to suggest!

Make sure you have plenty of magnesium and potassium, ideally from your diet, too. I get neuropathy and can lose the feeling in my toes if I'm short of potassium: it's a good barometer symptom for me.

It's definitely worth getting your vitamin D levels checked as well as this deficiency can also stop the B12 working optimally and have similar symptoms in itself.

Well done for listening to your body and trying to get it feeling good again.

Good luck with it all.

[NOTI1 in reply to deniseinmilden]

I can ask for tests for magnesium and pottasium; I do not know if these have been done before. I take regular high vit d3 so I my dbcould in theory be too high. Thank you

[deniseinmilden in reply to NOTI1]

Thank you for your reply!If you can get the blood tests done when your symptoms are bad that will give you a better idea.

Soluble minerals like magnesium and potassium do fluctuate quite a lot depending on what you've eaten, your recent activity and stress (why tennis players eat bananas during their games, to keep their levels up) but a test will give you an idea.

Alternatively you could look up the best dietary sources of them and see if increasing them that way helps.

If you know you are low and diet alone isn't enough, you can have Epsom Salts baths or put it on your skin for magnesium and LoSalt for potassium.

Might be worth trying these things as they are known problems with B12d before asking to see a neurologist. Quite often they don't know about deficiencies and aren't much help - they tend to put you on drugs which mask the problems, rather than curing them.

PS: if you aren't on anticoagulants, it's good to have K2 with your D3 - but I expect you know that.

Good luck and please ask again if you want to.

[NOTI1 in reply to deniseinmilden]

I have a good duet but will focus on increasing relevant foods for potassium and magnesium. I have, in the past, been low on zinc so will look at that too. I can dig out the Epsom salts and try these.I did not know about k2; I will look it up. Thanks

[Narwhal10 in reply to NOTI1]

Hi NOTI1,

Please apply for your Medical Records in hard copy, so you do know if Magnesium was tested before. If you are U.K. based potassium is part of bog standard blood tests but it was a person(s) who decided the range and the cut-off level.

Please remember that the NHS caters to millions of people so they are going to do things at the cheapest, lowest price. Ever wonder why the cut-off level for B12 is low ? Quite simply - it is because of money.

The efficacy of the magnesium blood test again does NOT reflect what is happening at cell level.

As stated by a highly respectable private dietician, Most people have suboptimal magnesium, even I take it.

So, I recommend taking Magnesium Threonate because it crosses the blood brain barrier. Note your biological response which may take a week.

Many people have symptoms trackers by way of Apps whilst others use good old pen and paper in the form of a diary.

Deniseinmilden gives excellent advice. Please know your GP has very little to no training in Nutrition or Dietetics. It is not their fault - it is their training.

Best wishes

🐳

[NOTI1 in reply to MrsTuft]

I will go back to the gp and ask for more blood tests; I was also building up the courage to ask for a referral to neurology due to my increasing symptoms.

[brenanddave]

Hi NotI1 It sounds like you are needing more regular b12 . If you are having neuro symptoms every second day at least until no further improvement I have been SI twice daily for mine. I am dropping back to one a day now my symptoms are really only feet pins and needles. Good luck!

[NOTI1 in reply to brenanddave]

I was SI once a week but had started to feel very lightheaded, dizzy and sort of detached so had dropped down to once every two weeks. I will try increasing again. Thank you

[deniseinmilden in reply to NOTI1]

Definitely sounds like you are getting short of other vitamins and minerals somewhere. It's taken me years to get mine well balanced out - and they easily get out of kilter again - but it's well worth it once you do get everything in the correct balance.

The processes that use B12 for energy release, DNA (and therefore cell) replication, and nerve function, all use lots of other vitamins and minerals to work so if any one is in short supply it becomes a "limiting factor", things don't work properly and symptoms return. Symptoms are our body's way of telling us that something is wrong.

Potassium and sodium are essential for nerve (and therefore brain) function but we are rarely short of sodium so if you have neuropathy it's usually worth checking potassium levels.

I take a broad spectrum multi vitamin and mineral supplement (and the supermarket ones are as good as, if not better than, the more expensive branded ones) and then add in potassium and magnesium on top, as the multivitamin and mineral supplements don't have potassium, or enough magnesium, for me. I use potassium chloride and magnesium chloride. Mag chloride is a tiny molecule so is possibly the most bio-availabile of the main sources of magnesium, but is poorly tolerated by most people because of this. Even Mag sulphate (Epsom Salts) is usually used as a laxative! Mag citrate is even less available and magnesium oxide (cheap and used in most supplements because it is "safer" = least effective) has the lowest uptake and conversion ratio.

If you need it, magnesium compounds taste sweet: if you don't they taste terrible! 😁 Just a bit of curious information.

[ReallyWondering in reply to deniseinmilden]

What about magnesium glycinate? Is that ok to take?

[NOTI1 in reply to deniseinmilden]

I will try your advice. I could sometimes be low in sodium as I have always avoided it as much as possible. I can also get migraines with multi supplements so try to take only what I need. Just awkward I think!

[brenanddave in reply to NOTI1]

You may have needed to tweak your cofactors with more regular b12. I take 5mg of folic acid , a b12 complex with 10mg or less of b6 and magnesium daily. When using more b12 to build yout blood up and fix symptoms you can find it puts the balance out with those additional vits. x

[NOTI1 in reply to brenanddave]

My increased symptoms get worse after exertion so exercise or a really busy couple of days. I hate the injections so much and worry about constantly injecting into leg muscle.

[deniseinmilden in reply to NOTI1]

That also sounds like a deficiency of something, doesn't it - as exercise further depletes our reserves.

If it's any consolation, I've been self injecting every day for 8 and a half years now and my legs are still fine! I use 1.5mg in 1ml ampoules.

I get migraines too - hideous things. I had covid in May and then had migraines every day throughout June, July and August, and most of September. I get them because of low progesterone and every other excuse my body can think of! So I know what you mean about wanting to be careful.

I hope you find something that works for you!

[Oneash]

Don't forget if you are reversing out, things can get worse before they get better. Your system has a lot of healing to do. Do take lots of extra foliate. Liver is a very good source, beans and greens. Spread marmite like it's honey! B12 and foliate work hand in hand.

As others have said SI every other day.

[NOTI1]

Thank you; I am vegetarian but have a healthy, thought through diet. I am going to write out a plan based on and including all the really helpful advice I have been given from all of you this morning.