Just diagnosed. Scared.

[nessarose714]

Hi I was just tested for mitochondrial (m2) antibody and tested at 76.4 level. The dr told me that i have pbc. He it's sending me to g.i specialist. Also a liver ultrasound. I had my gallbladder removed march 10 2016 and also a liver biopsy then because a surgeon told me he would not do my surgery because it showed i had cirrhosis. So i was sent to another surgeon and he did the gallbladder removal. Told me i have a fatty liver and asked if i drank alcohol. I told him no. He said ok good as long as u don't drink youll be ok. I asked him well what's that mean he said you'll be fine. So 4 months later I'm diagnosed with pbc. Im so saddened and not sure what to feel i just was told this morning. My symptoms are upper right quadrant pain. Lower back pain. Joint aches. Extremely fatigue. Weak. Dizzy. Im seeing a g.i specialist next wed. And right now i just keep having anxiety because i don't know what stage I'm at. How does someone get this? How was this not seen on my recent biopsy. My ALT and AST levels are normal. The only thing abnormal have always been my red blood cells cause my anemia I'm at 9.8. And high platelet count at about498-500 range. Please someone give me comfort im scared. Im so sensitive to medications and antibiotics and i see that people have to take a medicine your whole life does it make you feel weird? Please someone message me or reply back. Thank you be blessed.

[pip-lit]

I'm sorry you are feeling so anxious. I hope you can receive the best treatment possible and get explanations from the medical professionals along the way which reassure you. We just go from day to day, try to keep cheerful and have a laugh when we can, and accept all the uncertainty that's involved. Some days are easier than others. But you are not alone here -this forum is made up of good people willing to share their experiences and hard-won knowledge and who know exactly what you are going through. My partner, who has cirrhosis, and I are quite new on here. Best of luck and I hope things work outxxx

[gmo3352]

I wish i knew magic words to ease your worries and pain. I have stage 4 PBC (cirhossis) and thanks to the advise and knowledge i have learned from the dear people on this site, i have changed my diet, exercise and general outlook. The diagnosis is frightening to hear, but please know there is a lot of life ahead. The medication generally used to treat the disease is Urso, a form of sythetic bile. I had no problem with the meds, actually, i felt so much better! There is an alternative med if you struggle with Urso. I was also placed on high amounts of Vit. D, which really eased my bone and joint pain. Do you have a hepatologist? I hope that is the specialist you are waiting to see. Makes all the difference. Make a list of all your questions and concerns to ask your doctor during your visit. I find bringing my husband with me really helps. For some reason, hearing the news still makes me shut down a little, and i can see my doctors lips moving, but my comprehension, yikes! And it is best not to loose a second of their advice! If you can, place these worries aside until you see your specialist. Cut back on sodium amd white sugar, my weakness! And live each day. I regret loosing days to worries i can't change. Dont have my regrets!

All the best. Please let me know how you are doing.

[nessarose714 in reply to gmo3352]

Thank you so much for replying. I Am having a hard time with this and sleep it's not on my side. Mostly feeling exhausted and fatigue all day. I'm waiting to see a g.i specialist. I will ask my dr to also send me to a hepatologist. Is that a liver specialist? Your at stage 4? What is going to happen are you getting a transplant or is it just the meds that work for you? I'm really trying not to worry. I felt like the dr told me an immediate death sentence yesterday. I know i must stay positive but sometimes i guess that's hard knowing there's something wrong and all the symptoms i feel. The vitamin D im very low on. In the past ive never done good with meds or even when i tried taking iron for anemia that didn't even sit well with me so they tell me eat cereal. So many people with this condition im starting to see get achy and joint pain. So glad im not alone. My whole body aches most days. Some days are better than others. Im so thankful for this site and i don't feel alone.

[nessarose714 in reply to gmo3352]

Oh what does sodium n white sugar do? Forgot to ask in my last reply

[gmo3352]

Hi! Where to start..sugar, salt and animal proteins are difficult for the liver to process. When our livers are injured by disease, they can't process nutrients or dispose of toxins as well as they should, which leaves toxins free to cause more damage. By limiting some of the more difficult to process foods from our diet, we don't ask as much from our liver, and hopefully we can limit further damage. The Liver Foundation which sponsors this site has a video and wonderful info. You can call or email them, the contact info is on the home page. There are some wonderful websites to check. I like the Mayo Clinic website...caution, don't randomly google liver damage, the info is often inaccuttate and frightening. I also don't process meds or vitamins well. I asked my hepatologist if this could be caused from the liver disease, got a "possible." So it is a catch 22... But truthfully, the once a week, 10,000 units of VitD i take is well worth the stomach upset. It hurt to walk, write, cook, even make a bed...i noticed my hands even look less deformed! YEAH! I never heard about eating cereal. Interesting. I also think the VitD helped my sadness level...nothing like pain to make one blue! And most importantly, this is not a death sentence. As has been so often stated here, you die with this disease, not because of it. Even in stage 4 there is so much hope! My MELD score is too low😅 to need a transplant. But, It is a wake ip call. Please love the day. Grab as much joy and as little worry as you can.

[nessarose714 in reply to gmo3352]

What is a MELD score? Ya i will try some vit D. Cause this pain sucks. I will def check out the videos. How are you feeling now? Yea my mood aint the greatest i feel blue most of these days simply because i didn't know what was wrong then i found out and I'm even more devasted. So if i may ask what things do you eat? My friend told me to start juicing have you tried that?

[Ginger_11]

Hi. Don't be scared, most people live with this condition for a long time. Stages of the disease are not accurate as they take biopsies and one part of the liver may not be the same as any other area. Specialists are going away from diagnosing stages and relying more on the specific blood tests they do on a regular basis. Don't get caught up in the "stages" too much. The PBCers community website in USA as well as the Australian and Canadian Liver websites are really easy to understand and explain things - so is the Mayo Clinic website in America. They also list a lot more symptoms that you may or may not encounter than the UK sites. It opened my eyes I can tell you. The secret is to find out all you can about your condition as this will alleviate your anxiety. Knowledge is power as they say and if you are well informed, you can face the future without trepidation. Good luck to you. NB Go to the Specialist with pre written queries, so that you are not tongue tied and don't get the info you really need.

[gwillistexas]

I was also diagnosed 3 weeks ago with PBC. My mitochondrial count was high. I had the liver ultrasound & it was normal, but because of the Mitochondrial result, I was referred to a GI. He started me on Urso but I developed hives. We are now trying to change meds. Just remember, this disease can be managed. You will do fine.

[gwillistexas]

I also had upper quadrant pain. It had almost gone away with Urso & im saddened I can't take it.