mr: hi everyone after 5 months of agony the docs dont... - NRAS

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sisso profile image
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hi everyone after 5 months of agony the docs dont seem to be able to commit.rhuematic arthritis or b12 deficiency desparate for help

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sisso
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Adrian587 profile image
Adrian587

Hey, have you had a blood test? That is the first thing you need to get it will show if you have RA or b12 deficiency or any other underlying condition.

I'm assuming they have tested your blood for everything including autoantibodies (Rheumatoid Factor, Anti-CCP, Serum B12 and inflammatory markers?).

I don't think Pernicous Anaemia (B12 deficiency) would give you joint pain that has you in agony as you describe although I'm aware that it can cause equally unpleasant symptoms to RA. Ironically I have diagnosed RA but am struggling with symptoms that would be well explained by B12 deficiency - which I don't have. Waiting to see the neurologist and feeling pretty lousy.

So I understand the limbo, the uncertainty and the pain. It shouldn't be this hard to diagnose and treat Pernicous Anaemia though - even if you are low within range or borderline you should be given B12 injections for a while and see if this clears the symptoms up. I do know B12 is one thing you can't overdose on as any excess will leave your body naturally but I wouldn't advise you to take it without your doctor's say so at this stage. I take supplements orally but my symptoms are just the same and my serum B12 wasn't too bad so I'll stop when they run out as they aren't cheap.

Some people don't absorb B12 properly and need to get it by injection. Sorry you probably know all this. There is a HealthUnlocked for Pernicous Anaemia sufferers too which might be useful to use as well as this community. Twitchy

gwen2013 profile image
gwen2013 in reply to

i have b12 injections every 9 weeks now, at first it was every week, with blood test every other week, they found out from a blood test they did in hospital about 15 years ago, i didn't have joint pain when i was first diagnosed with b12, i was just tired and had bad heads all the time,

nomoreheels profile image
nomoreheels

Hiya sisal, welcome. I've not been in that limbo position you're in just now as I had a cut & dried seropositive result. Nevertheless it must be awful the not knowing & I would think not on medication to help you being in pain. Maybe it would be worth seeing your GP again if only to give you something for your pain in the meantime if your Rheumy didn't. Did he say if you needed more tests to delve further to reach a definitive diagnosis?

carotopgal profile image
carotopgal

I was wondering if they have done x-rays. All of my blood tests (every single one!) came back negative, and my rheumy was going to send me on my way. He insisted it wasn't RA. Then I asked for an x-ray of my hands. He said yes, and low and behold the radiologist came back with a report of inflammatory arthritis. The rheumy then put me on Plaquinel (Hydroxychloroquine). So be insistent on the extra testing.

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