Went to see consultant today and he said I have PBC but pre-clinical PBC. and that it may never develop into the disease. He's arranging a bone scan and an MRI on my back because my back went the other week and has left me with severe sciatic pain in my leg. He's also doing trials to find out why some people get it to understand why there seems to be clusters in some areas, I said I would be happy for him to send me the kit. He was a lovely consultant and very thorough which has helped me no end. I'm a happy bunny with this information, He wants to see me again in 6 months! I'm also having my blood checked "again" because LFTs fluctuate. Very pleased with the outcome x
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skywalker
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Please see below. Have followed up with your doc..
I have seen the doc. You recommended Pat. He was indeed very nice and informative. He is feeling we can wait on the URSO. Due to the liver biopsy having no signs as of yet. Gave me script for the usual blood work in 6 months + Celiac disease. I has brought in all blood work, CAT scan and liver biopsy. He said it is so slow moving we can still wait on the URSO. I had to be reassured about 8 times. My original doc. Is excellent & cautious but don't like the idea of follow ups with receptionist. I was disappointed your doc. Did not give me his email
Talk to you soon and thanks again for the great referral.
I'm glad you liked him. I got him to respond via email by sending an email to the general office (web site has the email) and they forwarded it to him and he wrote back. I'm glad you are waiting on things. He's very confident and I believe him. Great news. Keep me updated! Pat
We'll see. I was, quite frankly, surprised but he doesn't expect a big change in 6 months. At that time I can always go on it. I hesitate with that pill because it's forever and so many people seem to have side effects. If I will need it then, so be it. Were your numbers exceedinly high? With me, he doesn't expect to do another liver test.
Please write to me privately at Francineadrianne@yahoo.com. There is something I want to share with yOu. Please put Pat from Red Bank in subject as I get lots of SPAM. Thanks!
Skywalker. Very happy for you and had similar response due to second opinion. Read below. Francineadrianne.
Being a Naturopath, I still believe even with medicine, food can heal. I would take turmeric, liver support, supplements for cell health and juice alot. I am also a vegan. You can still get better! I am on sites with people who heal from MS and Cancer with food!
Sooo glad you got to talk to someone who could give you good, clear and even positive explanations. Where is he based?? I have a query though, did he say what exactly 'pre-clinical' means? I'm wondering what the difference is to my, 'pre-symptomatic' ... I think I recall you saying you were AMA+ve, and that your were lfts okay, but you have some symptoms (fatigue, mainly, with aches .... Yes?? - apologies if I've remembered wrong) , I'm similar, but with no symptoms as yet. I'm still dithering about seeing a new consultant, but am now waiting ... for a couple of other (unconnected) health issues to be sorted, first. I had also hoped to have a bit more feedback on good consultants in Devon, although one sounds okay.
But good news, for you, you deserve it. Take care, and let us know how things go.
I think it means because my liver is fine, no damage to liver and my lfts are normal. He's based at the Princess Alexandra hospital in Harlow (Essex) His name is Dr Ghosh although he is a consultant! He reckons he's got about 50 PBC patients and has a special interest in PBC!
I'm just relieved there's no liver damage and feel a little guilty also has there are people on here who are further advanced and have many unpleasant symptoms.
I'm happy to have a bone scan too, he's making sure I have a thorough M.O.T.
That's great. He does sound really good. I hope I find someone as thorough, because the more I read, the more I think that I should have had far more checks.
Take care, look after yourself and revel in the relief of being in safe hands.
You need to find out if you have a strong M2 antibody! As well as the AMA! Also a MRCP scan will help.... Stop putting it off! It takes months for the appointments anyway, you need to find out... So that you know what's what! Good luck x
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