Who is right? : I'm really confused... - Pernicious Anaemi...

Pernicious Anaemia Society

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Who is right?

Cb1963•

5 years ago•8 Replies

I'm really confused here, now I don't know if I have PA, I started the loading doses every other week well over a year ago, and then went onto the 3 monthly cycle, and have had to take folic acid 5mg just recently, now I've read that some folk on here are on a 2 monthly cycle, I'm based in Scotland and I wonder how many other people are on different cycles? I've had numerous problems with my stomach over the years and also have had a lot of general anaesthetics, and also on lifetime omeprazole, which can all affect vitamin B12 absorbtion, I just feel that doctors are either not to concerned about the problems or are just following each health authority procedure, the symptoms are progressive and without being to forceful with my gp I mentioned that my tongue is constantly tingling and have a ringing sensation in my ears, more symptoms to be added to the list, it just seems like there is a lot of confusion, as for PA or not I haven't got a clue, anyone else in this situation, many thanks guys for any input, cheers.

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Ritchie12685 years ago

Someone with more knowledge than me will answer this for you but, after keeping a diary, 3 monthly was nowhere near enough for me. So after self injecting every other day since Xmas most of my symptoms have now disappeared.

Everyone is different but, you sound like one of many of us with PA that need way more often than the 2-3 months.

I know injections should be every other day until symptoms ease.

Cb1963• in reply toRitchie12685 years ago

Yep I did start originally with the loading doses, and then went onto the 3 monthly cycle, I don't even know if I have PA, but obviously I must have some sort of problems, and like I said on top of the pins and needles, muscle twitching, headaches, and generally feeling dog tired, I've ended up with the tongue issues and ringing in my ears, there just doesn't seem to be any consistency, it's bad enough trying to get your point over to the doctors, but I just don't think this condition is taken seriously enough,what a nightmare, thank you so much for your swift reply, it can make you feel like a fraudsters trying to put this point over, and I really feel it needs a bigger audience for the medical profession to understand how it affects the day to day lives of folk. Cheers.

Ritchie1268• in reply toCb19635 years ago

I felt like a hypocondriac with all the symptoms, very many have said exactly the same thing.

I was told I had IBS around 20 years ago but it was never confirmed.

Up until diagnosed with PA last year, my Dr prescribed me omeprazole for acid reflux that I'd suffered for years with also, but since I learned how it depletes B12, I know longer take it. The acid reflux has now almost vanished since self injecting every other day.

It is a constant battle due to many certain uneducated dr's.

Are you a member of the PAS? They are a great help.

Cb1963• in reply toRitchie12685 years ago

I am a little unsure stopping the omeprazole is the best case scenario for me, as I had an internal stomach bleeding, either caused by excessive acid or the h pylori stomach bug, as I was treated for the bug, I knew I was ill at the time but a lot was happening, my uncle had died and two weeks later my father died, and I ignored my health, only to ring the NHS 111 service for advice, and was immediately admitted to hospital, I think knowing how serious the stomach acid can be, I'd rather take the tablet to keep the acid at bay, I suppose its down to personal choices, even though I don't have reflux that often I think it's a small price to pay, perhaps its the area where I live and maybe doctors not understanding the effects of these antacids that can cause these symptoms, I reckon anyone who is on omeprazole should be automatically called in for blood tests say after six months to see if folk are starting to suffer with the symptoms, I doubt I'll ever get rid of the pins and needles, the burning sensations, and all the other symptoms that come along with B12 deficiency, I feel my condition had been ignored for far too long, and trying for the nerves to repair themselves is on the sell buy date, over 7 years now, and no improvement, and started with the tongue sensation and ringing in the ears, all new symptoms, I hope you condition improves in time, and many thanks for your reply, cheers.

Ritchie1268• in reply toCb19635 years ago

Thank you.

You've had a lot to deal with!

What I would say is don't give up & you're definitely in the right place being on here.

Any concerns or advice etc, there are loads of amazing people on here with way more knowledge than me that can offer not only advice, but also hope.

I don't know where I would be without the advice from others on here.

Good luck & take care.

Lurcher-lady• in reply toCb19635 years ago

My friend who put me in touch with the pas after being diagnosed with low b12, takes omeprazole too. She’s not got P.A., but because of the omeprazole the treatment is the same. My doc did an intrinsic test which came back clear, so not P.A.