shock horror!!

[jillc39]

saw the neurologist last night - he cant seem to stop the terrible pain In my legs and feet and so has changed his diagnosis from PA to severe b12 deficiency with neuropathic pain.... so that means I should leave you all dear friends as I don't qualify - and there was me with my hotel already booked for the conference.

[Foggyme Administrator]

Hi jillc39. Really sorry that you're having problems with pain.

Not sure how you can suddenly not have PA if you've had a confirmed diagnosis - others more knowledgable may have some ideas. And you could still have PA even if the tests are negative. So, more confused foggyness for me!

And the thought of leaving - hope this was a joke!

I shall fully expect to see you at the conference in December (though still trying to work out how we will all identify each other).

Hope the 'new' diagnosis leads to better pain control.

Take care 😀

[fbirder in reply to Foggyme]

I shall fully expect to see you at the conference in December (though still trying to work out how we will all identify each other).

I was thinking of getting some special HealthUnlocked badges with people's usernames. I'd be quite happy to arrange it and get the badges done. I'll give more info closer to the date.

[Foggyme Administrator in reply to fbirder]

That's a brilliant idea Fbirder. Count me in please. Will keep an eye out for info 😃😃

[wedgewood in reply to fbirder]

Brilliant idea fbirder.We are all happy to pay you for all that I'm sure.

[Marz in reply to fbirder]

When I went to the Thyroid UK Conference - my name was on the front of the label - and I just wrote my username on the back - just a quick flick revealed all

[LtAngua52 in reply to fbirder]

Maybe we should just wear a carnation? Works in romance novels! If not, a badge it is.

[Gambit62 Administrator]

with Hidden on this

I have no idea what the cause of my B12 absorption problems are - just know they are there - and that doesn't stop me being a member of the PAS though other commitments will stop me being at the conference.

This forum is for everyone who has a problem with B12 absorption

[Foggyme Administrator in reply to Gambit62]

Hi gambit62. Doing notes at the conference if a non-foggy day. Forwarding to a few folks who can't make it. Happy to,put you in the list 📝 😃

[Gambit62 Administrator in reply to Foggyme]

thanks. let me know when the notes are available

[Foggyme Administrator in reply to Gambit62]

Will do 😀

[jillc39]

Right I will stay... great. Please make the badges large enough to read without our glasses on!.

[Sleepybunny]

Hi,

I do not have a confirmed diagnosis of PA but am symptomatic for B12 deficiency so this forum seems the closest match for my health problems. There are other people on here who do not have a diagnosis of PA so please don't leave.

Hope your neurologist is aware that it is possible to have Antibody Negative PA and has a copy of the "BCSH Cobalamin and Folate Guidelines" which mention Antibody Negative PA.

"so has changed his diagnosis from PA to severe b12 deficiency with neuropathic pain"

Perhaps the PAS might be worth phoning and talking to about this. Has he actually said that you do not have PA or is it that he thinks you have both diagnoses?

pernicious-anaemia-society....

01656 769 717

[jillc39]

no sleepybunny - he just announced that I do not have PA just severe b12 deficiency - but he is going me a b12 injection one a week for four weeks and then once a month - so I forgive him - he can call it what he likes!!!