I have been being tested for two years by my doctors for autoimmune diseases. I have had high liver enzymes for some 6 or more years and upper right quadrant pain. Two years ago my Rheum said my white blood cells were attacking my liver and I had two positive ANA's. So, i had blood tests for another year from him and my tests went back to normal ranges so he sent me to a gastro who found on an ultrasound that I had a fatty liver but nothing more so I quit going to the doctors for a year and felt alot better. Well in the last 5 mths I started getting really swollen under my left rib which was making it hard to breathe, diarrhea 3,4 times a day and always felt like I was getting the flu and this overwhelming fatigue. I have had a dry mouth for several years and now my eyes get so dry it drives me nuts. I used to have the crazy itching about 5 yrs ago but it went away. Is one positive test of an mitochondrial m2 a definite for pbc? My liver dr confirmed the fatty liver disease last week but he ordered more specific blood tests and they came back with the positive ama m2 and a weak positive F-Actin. My ama m2 was 34.5 It was on a 16 two years ago. Can anyone tell me how high of a score that is as well and what were your symptoms and in what order did they start. TIA
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AuntDeeDee
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Why is it that doctors do not pick up on this PBC disease? It's been around now for 25 plus years from what I've read. But I keep hearing about ones with specific symptoms that keep going on for years undiagnosed and so no medication to slow it down either. It happened to me the same way. My liver function tests were elevated way back in 2009. My doctor said it was mild fatty liver. I was never checked further. I had my gallbladder removed, several other surgeries and all that blood work that was done each time and still no diagnosis until 2016. A bout with gastritis sent me to a GI who did more labs. My AMA-M2 was 82..or 87 i can't remember. My hepatologist told me anything over 1 is positive for PBC in conjunction with elevated liver enzymes. My Alk-phos was still elevated also. Anyway, I was finally diagnosed and started URSO in 2016. As far as symptoms, I started with occasional right upper quadrant pain, nausea, achy joints and muscles and dry eyes. Yes... these dry eyes are a pain aren't they? I go through bottles of Thera tears and other artificial tear drops too. 😔
Have you been diagnosed? If not, see someone soon. Keep in mind that PBC is a slow progressing disease. Even so, the sooner you start medications the better. There are 2, Ursodiol and Ocaliva.
Come back and post how all is going with you. There are a great group of women and a few men here too who can share their experiences and advice.
Nice to meet you too! I had my ama m2 for the first time last week with my liver dr but I go back to see him in 4 weeks. My pcp saw me this week and wanted me to see the liver dr sooner because of my test results. Im waiting for my liver Dr's nurse to call me back today to explain the results. I read a positive test is 98% accurate for pbc as well. I have had to change doctors over the years and I finally got to see a rheumatologist because my mom had severe rheumatoid arthritis and I was getting arthritis in most of my joint which was peripheral so like both hips, both knees etc. He suspected AIH but said my liver ensymes were alot better at the time so he sent me to a gastroenterologist who did the ultrasound and found mildly fatty liver early last year. I didnt go back because I felt better and was sick of going to the dr all the time. But 4 mths ago it came back with a vengeance so I made an appt with the liver dr. He suspected just Fatty Liver Disease but it a whole different set of blood tests. Which I get to read online. That is when I found the positive AMA M2. I know my body pretty good and this fatigue is killing me. I constantly have to cancel plans and when I do go out Im ready to come home. But I started the fatty liver diet and started exercising 3 times a day and it does make me feel better...I dont bloat up as bad..which makes it so hard to go to sleep..and the exercise gives me energy for a while to get things done. Yes girl the itchy dry eyes drives me crazy and makes it hard to see to drive but I do use liquid tears and drink plenty of water and it helps some. Colas make my dry mouth worse so I steer clear of them. Thanks for the fast response! Oh and if I do happen to get jaundice should I go to the hosp?
Yes, jaundice is a pretty good sign that your liver is telling you "help me"...but I agree with your PCP. Try to get in to see a hepatologist sooner. 👍
Having read all you’ve gone through, I feel very fortunate that my Internist stays on top of my labs. When he saw elevated Alk Phos he immediately tested AMA M2, which was high. Ordered ultrasound which showed all organs normal, including liver. Sent me to a GI who scheduled fibroscan which showed early stage 2 fibrosis in my duct only. I take Ocaliva & so far it is bringing numbers down & GI is very pleased. Labs were monthly & now every 3 months. Good luck to you.
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