PBC Foundation

Wrong result

I am in double shock now , my specialist said all my autoimmune test s were negative when he emailed . His secretary sent me the results and can you believe the Mitochondrial abs m2 was positive for PBC and my liver function test have gone up agAin. I cannot believe he did not see the result . He has apologised , o have never felt so drained . I am on my own my husband is working away and I am a shaky gibbering , crying wreck . I now await biopsy . In a way I feel strangely relieved that o now know what is going on and fibro scan showed mild fibrosis . Sorry to go on . I was wondering whether to see the leading expert in Birmingham Mr Hirshfield . I have lost a bit of confidence in my specialist . Never thought I would say that😢

Thank you for letting me off loAd

MiriAm x

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*hug* I'm so very sorry for the shock you are going through. At least you know what is going on with your liver and have found a nice group here for support. ❤

I hope your husband gets home soon.

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Bless you I am the Glue . I can't stop crying. My specialist emailed a little while ago . I sent him all my results I cannot believe he did not see them . He is so kind and very well thought of . I'm not sure whether to go to Birmingham to Mr Gideon Hirshfield .

I have lost a bit of confidence yet I so liked the professor. He is knowledgeable and caring . Thank you for my hug in a way I am relieved . I can't thank you enough

Love Miriam

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So sorry. My M2 & Alk phosphate was high. Don't know about liver function test yet. That will be checked in November. Prayers for you🙏🏻

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Mirimaur. I would definitely go and find myself another competent specialist.

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Hi Rocki My specialist called me this morning and explained what happened . Was not his fault . I feel much better since speaking with him. He knows all the drugs as he helped develope them he has booked my biopsy and I am to have a bone scan . I do trust in him I was just very confused last night, thank you for helping me

Miriam

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Then I am glad for you. It is good to have a good trust relationship with your Specialist. All the best.

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Thank you Rickie I was upset last night . When he called this morning he spent a long time on the phone calming me and explaining everything . He wants me to have a bone density scan and wants to prescribe special supplements for my bones. He will explain more when I see him

Thank you for caring about me and helping me . I very sensitive in nature a little fragile but try to be strong within

Miriam x

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Mirimaur. I understand how you feel. Those bone density scans are very important. I take supplements but have already fractured both my patellas and left arm. Must say I am nearly 77. So there is lots of hope for you young ones. Take care. All the best x

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That sucks! we are all human we make mistakes so as drs..don't get upset I need to focus on treatment now..

🙏❤️

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Sachin , you are right . He called me this morning chatted with me for fifteen minutes to calm me down and to explain what happened . It was to do with the lab. He is a leading authority on these diseases and worked on the drugs we use. I do trust him he is so very kind and gentle with me and very knowledgable. I was feeling angry and sorry for myself last night . I am grateful I now know what is wrong . I will get tearful again I sure. Just grateful there are drugs that can help

Thank you

Miriamx

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The fact that he took the time to call you back and reassure you says a lot about him. He clearly gave it much thought after you hung up and tried to find out how it happened and felt like he let you down - and then did something about it. In my book, that shows he is conscientious and caring and that you should give him another chance.

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Dear litsygirl I agree with you . He is very knowledgable He is an eminent professor on liver studies . He is also a very lovely kind person .I asked him if he would be there for my liver biopsy as I am scared. He said he is not normally present but if I let him know the date and if he is the hospital he will be there . I actually feel very blessed to have him and his team at the Royal Free. I just pray my biopsy will be ok . Thank you for your lovely reply

Miriamx

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just try and remember you are still the same as you were before you got the result.... as you say... at least its a relief to know what is wrong.....

it also means that ifthere any treatments e. g. urso you can now be helped with anything useful hopefully.

i completely understand your frustration... i think you should go and see dr hirschfield... for some reassurance. good luck cazer.

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Hi, for certain you need to get a 2nd opinion, if you can see Dr Hirshfield he is one of the finest doctors in this field. I have seen him many times.

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My professor called me this morning to explain everything , it was not his fault as such . I do trust in him he is also a world wide renowned figure in these illnesses. He was active in the development of the drugs used for PBC

I will just move on have my biopsy done next week and try to be positive , thank you for the info on Mr Hirshfield I will mention to my specialist . I feel a bit stronger now relieved we know what's going on . My fibro scan showed mild fibrosis . I will let you all know what happens

Thank you all for your kindness miriam

M

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Always get your test results in hand go over them with a fine eye to the detail then always get a second opinion.

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It's all sorted now , he has spoken to me and I will see him . I do actually trust my professor. He is very clued up on it all . I was just feeling upset yesterday . Actually I still am today but not with him.

It was a mistake from the lab. He noticed it today and called me .

I just trying to be strong still a bit shaken.

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I would be too, I was misdiagnosed by 2 GI clinics I was so upset I isolated myself for months, now in good hands at U Of M expert liver clinic there. Hang in there but still get copies of all your tests and review them yourself.

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