Hi all, my latest update and I am more scared and confused than ever. I if you remember finally ditched the gastro guy, got a fab hepatologist who did a fibro, dexa scan and just had the MRCP last week. She started from scratch. I had seen her twice she was moving fast to get me either a diagnosis for PBC or PSC.
OK so she said curiously the AMA test flickered positive but the marker?confirmation test showed negative. Does anybody know what this means?
I went today as she booked me in outside her usual clinic, to discuss results of MRCP as she was looking for PSC.
All clear (good thing I know and I am holding onto that as a positive) but I walked in and I had another fibro consultant. Mary the hepatologist has retired, we now have no heps at my hospital. I could cry and cry. My GP referred me as he said Addenbrookes or Birmingham would take longer.
He said your alk phos is better and you look well, scan clear so all good.
I said does this not mean the Urso is doing its job, he said not necessarily the bile stone has disappeared it may be that.
My husband (thank God for him) as he says I ' fake being well to make it easier on others' He said last night I woke to Jo standing in the bedroom clawing at herself and silently crying, she does this most nights and never wakes me to complain, she took two hours to wash hair shave her legs, tend to her Granny, sat exhausted then put on a dress made herself look OK to go into the world. She may look well but she took all of her day's energy to get here.
The consultant sat up a bit, I said I have been on Urso for 9 weeks that surely would (if working) be a cause for my GGT ALP to be lowering?
He said you really need to see a liver specialist you may need a transplant!!!
Then booked me in for biopsy but said Mary was against a biopsy she said they carry complications and went for all the other used tests.
He said biopsy carries the risk of organ damage, severe blood loss, permanent pain and now I am asking why if I need a specialist is he doing it?
I expected to be reassured today, now I feel back at the start, with all the usual symptoms robbing me of joy.
If I had shut up he was going to dispatch me off with a 'you look well, liver enzymes are improving, review in 6 months' his first decision, now I feel as I asked about negative AMA and he had never heard of it, he is looking to do something taken more blood but won't send or tell me results he said it's not necessary. He said try Piriton, I am sure that would be bad for my liver, anybody know? Questran failed and I know about the other meds, but without a specialist I want to hang on. He was nice, but I feel not eqipped for my medical mystery.
Waiting for the PBC foundation to call but just feeling alone as hubby had to go back to work.