Changing symptoms: I've been having B1... - Pernicious Anaemi...

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Changing symptoms

MALP profile image
MALP
9 Replies

I've been having B12 shots several times a week since mid November, many of my original symptoms have improved, tremors, muscle spasms, pins and needles etc. However many of the muscles that originally spasmed a lot are still very stiff, not as flexible as they used to be. More weirdly other muscles seem to be stiffening up that were previously okay. I had blood tests to see if there were any inflammation issues, and these have come back clear, my B12 and folate are also sky high. GP has agreed to continue with injections regardless, as some improvements have been made. Do other people find there symptoms change? It just seems odd that new muscles are getting stiff and immobile even though I'm having the injections.

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MALP profile image
MALP
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9 Replies
clivealive profile image
clivealiveForum Support

Hi MALP ,

I'm not medically qualified to answer your questions but there are more knowledgeable folk on this forum who will give you good advice so "watch this space"!

From experience I think what you are going through is all part of the healing process and sometimes things tend to get worse before they get better.

It would appear from what you say, your doctor is following the guidelines and injections are to be continued until there is no further improvement. The "sky high" b12 levels are irrelevant once you start the injections.

Can you say why you are being given the injections? P.A. or b12 deficiency? Are you vegan or vegetarian? Have you had gastric surgery? Participate in extreme sports and so on?

I wish you well for the future.

MALP profile image
MALP in reply to clivealive

I was diagnosed PA (family history and symptoms), I'm not a veggie, and have not had gastric surgery, I am a Type 1 diabetic (more autoimmune stuff). I am a Yoga instructor, but we do a gentle form of Yoga, nothing hugely dynamic or strenuous. I think the Yoga stretching has helped stop me seizing up altogether!

Gambit62 profile image
Gambit62Administrator

stiffness in joints is quite common in B12 deficiency

muscle weakness is also a symptom of b12 deficiency so wondering if the stiffness could actually be the muscles firming up again as things heal - just that you didn't notice them getting flabby.

I don't think I experienced this problem but I did have problems with carpel tunnel - symptoms that I hadn't had for years started to resurface - which I took as a sign that things were healing and healing would mean going back through some of the symptoms I'd had.

The test results for B12 don't actually mean a lot now - certainly not being sky high. Levels in blood don't telly you what is actually going on at the cell level - whereas the improvement in symptoms does.

Hope that it starts to ease soon

MALP profile image
MALP

Thanks Gambit, it's not so much that the joints themselves are stiff, it's the rigidity and pain in the muscles that's not allowing the joints to function normally. I've never had problems with my arms before, so I don't think I'm revisiting old issues as things heal. It may be that the muscles are firming up again, they had atrophied a bit, but the pain also stops me doing anything by way of strengthening them so its a bit of a vicious circle.

Gambit62 profile image
Gambit62Administrator in reply to MALP

I tore my calf muscle about 10 days ago and that is just so uncomfortable so you definitely have my sympathy.

The pain may well be part of the healing - I think of it like the brain listening to the nerve cells through a lot of static up to now and as the static clears the signals are now deafening but it takes a while to figure out how to turn the volume down.

All I can really suggest is going with it for a while in the hope that it does start to improve.

I still get problems particularly in the ankles occassionally - some of it is stiffness but it can also be huge amounts of pain when I try to stand up and walk after sitting for a while - at this point taking some more B12 helps - but I'm at the very high end of B12 usage and been at it for a while longer.

pugdogs10 profile image
pugdogs10 in reply to MALP

Hi Could it be that you have been more active since your symptoms have improved? Maybe your muscles have not been used to working so hard or maybe unaccustomed exercise is causing your tendons to shorten and become painful. You do need to warm up before exercise and take it easy at first.

Good luck.

doityourself profile image
doityourself

Interested in your post and the replies because I have suffered back and neck muscle spasms during the last year also have noticed muscles stiffening up considerably. This coincided with the doubling of my b12 dose to 6 weekly so there might be some kind of link?? Healing - I'm not sure . Does anyone know any facts related to this muscle spasms issue?..

But hope you feel better soon

deniseinmilden profile image
deniseinmilden

Sounds to me like you may be getting short of potassium and magnesium.

If you Google them there's lots of information.

If you can, get them from your diet but if this isn't enough you can add in small amounts of LoSalt (you can get it in Co-op stores) for the potassium and Epsom Salts for the magnesium. Try it carefully to see if it works for you.

I suggest you also take a good multivitamin and mineral supplement as all sorts of things are needed.

Consider some extra folate too, even though your levels are high - I am just trialing methylfolate to see if that keeps my B12 working because it adds in a methyl group which is required for metabolisation (see fbirder's replies on the subject).

I hope it improves soon!

MALP profile image
MALP

Thanks Denise, I do take supplements plus magnesium and folate too, plus ensure I eat lots of bananas and avocados for the potassium, and bath regularly in epsom salts! In addition to my B12 jabs I also take a sublingual 5000 B12 methylcobalamin daily. The muscles that were originally a problem have improved a lot, mainly hamstrings and adductors, but now it's my upper arms and shoulders, mainly deltoids and upper trapezius, I find this odd that they should suddenly start being a big problem when they were fine before.

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