Recently diagnosed with pernicious anemia

[Lee1974]

Hi I'm 42 and was diagnosed with pa a couple of months ago. On b12 injections on alternate days and waiting to see a neurologist. My question is though the intense fatigue - which I had been putting down to having a one year old - is gone I'm still intermittently getting aching pains, muscle twitching all over, pins and needles in feet mainly, weakness in arms and legs, pain and stiffness in legs in the morning and more besides. It's hard to get much information and my gp is not very knowledgeable. So I wait to see the specialist in 5 weeks. Is it normal - though I know there's nothing standard about pa - to only get intermittent relief even with 8 weeks of b12 loading dose on alternate days? I'm quite worried about this and worry something more sinister is going on though these symptoms seem to tally with what I've read about pa. Any advice would be welcome and thanks in advance.

[deniseinmilden]

Hi!

To me it sounds like you are probably not getting enough potassium and / or magnesium. These are used up when the body utilises the extra B12 and are also needed for good muscle function.

I take a broad spectrum multivitamin and mineral supplement, plus extra folate, potassium, magnesium and iron.

Try to get the potassium and magnesium (and iron) from your diet as they can be toxic in large quantities but if you really can't get enough that way you can carefully supplement with potassium chloride (from LoSalt) and magnesium sulphate (Epsom Salts) or magnesium chloride. I have found iron bisglysinate is a good source of iron.

To function and repair lots of damage from years without treatment, I need 1.5 mg hydroxocobalamin, as well as all the above, every day - 3 times what you are getting.

For more information, including sources of supplies, you could look up my profile, by double clicking on my name, and see my post "My Experiences".

Good luck with feeling better soon!

[Lee1974 in reply to deniseinmilden]

That's all very helpful thank you. I'm taking a magnesium supplement, a broad spectrum multi vitamin and max strength omega 3 to help repair any nerve damage that has occurred.my feeling is that this has been developing for years and my pregnancy drained the last bit of b12 from me. I will try the lo salt as I hate bananas! Perhaps I do need higher dose of b12, my gp just gave me an open script for neo-cytamen so I am self managing until I see the neurologist. I will check out your profile too and thanks again.

[Sleepybunny]

Hi,

Some links to info on B12 deficiency and PA.

1) Pernicious Anaemia Society

pernicious-anaemia-society....

PAS tel no [phone]

2)

martynhooper.com/

3)

b12deficiency.info/

4)

b12d.org

5) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

6) Book "Could It Be B12 " by Sally Pacholok and JJ. Stuart

7) Pinned posts on this forum

8) I'd recommend reading the "BCSH Cobalamin and Folate Guidelines" if you are UK based. Has info on diagnosis and tretament of B12 and folate deficiency.

b-s-h.org.uk/guidelines/ click on "Diagnosis of b12 and Folate Deficiency"

[Lee1974 in reply to Sleepybunny]

Thanks for all the links, I ve been meaning to buy the Sally Pacholak book. I'm based in Ireland but have read the UK guidelines, probably similar to irish ones. To be honest my gp knows little about PA and at least he's honest enough to admit it! Because I've neurological symptoms he has referred me on so we ll see what the neurologist advises. Thanks again, hope you are managing well on your own journey.

[sirlam]

Please don’t worry! I had the same experience - the fatigue lifted after the 5 loading doses I was given but the neurological stuff (pins & needles, balance, memory loss, dodgy vision etc) was unchanged. Only when I started SI every other day for several months did that stuff start to improve. As I recall, the pins & needles went after 2-3 months but other things persisted and are still not sorted after 6 months. But I live in hope!! Particularly that my brain will work better

[Lee1974 in reply to sirlam]

Thanks so much for the reassurance. I think my case sounds quite similar to yours. it's a frustrating condition which is very hard to get a handle on. Just when I think I'm turning a corner...bam! Can I just ask is SI a subcutaneous injection? Many thanks for the advice, it really helps to know others understand PA and it's effects .

[sirlam]

I inject into my thigh muscle, alternating legs! Getting the co-factors right is very important and the timing - I sometimes have an extra jab if I am working very hard or feeling stressed or having some alcohol (e.g. son’s wedding!). Currently my pins and needles have returned in my hands, not all the time just sometimes so I am thinking of upping my jabs for a bit… it is all guess work!!

I don’t want to alarm you but you might want to get your child checked for B12. Babies and children can also be B12 deficient and this needs treatment without delay.

Good luck and do read all the literature that the PAS has accumulated!