Struggling waiting for diagnosis

Hi,

I tested positive for AMA M2 and ANA in March but as I moved house the transfer between specialists meant that I didn't find out what that meant until November. I have hyper mobility syndrome and arthritis (they have been querying rheumatoid for 3 years). My gamma Gt's have been raised for years, I recall being asked if I'm a heavy drinker first about age 16. I drink about 2 units a week. I am really struggling with extreme fatigue (though I do have a 14 month old) and aching, painful joints and bones. I have recently developed a swollen right wrist/hand/fingers which is very painful and I am now having Physio for. I also see a podiatrist for my foot pain, a rheumatologist because they've been querying immunosuppressant/ connective tissue disease for years. When I saw the gastroenterologist I didn't know why I was there (it was because of the positive AMA's but no one told me what that meant), the doctor had just started working at that clinic and I felt like he didn't give me the right information or ask me important questions. I now see I have a lot of symptoms of PBC and I feel like I'm in limbo. I have had a pain under my right rib for years which I put down to scar tissue after pneumonia, but maybe I was wrong. I have also been referred to the eye hospital in the past for dry eyes. I'm getting depressed honestly as I just wake up feeling shattered everyday. I'm having an MRI done of my liver on Saturday and then I just have to wait to see the gastro (who I have zero faith in) when I get an appointment.

I don't really know what to do with myself and I just wanted to express it to people who might understand.

Thanks and any advice appreciated

7 Replies

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  • Hello LauraLee 851,

    I have just read your post and will message you directly.

    Best wishes

    PBC Foundation

  • Thank you

  • You are welcome

    Best wishes

    PBC Foundation

  • Hi Lauralee851, when I first diagnosed, dr told me could have a small drink @ Xmas & on birthday, any alcohol very hard on liver. My eye dr put me on Restasis for dry eyes, helped a lot. Rheumatologist should be able to help to coordinate some treatments, all your Doctor s should be aware of all treatments by other doctors. Your gastro guy might have felt overwhelmed by your many symptoms, doctors , treatments. You have to become very knowledgeable about your condition, treatments , keep copies of your test results, write down your questions that you have for Doctor & write down answers. If you really don't like yr gastro guy & think he not giving good care to you, then get another one--- you going to be seeing these doctors for a long time....it's hard not to feel overwhelmed sometimes, but it passes. Good luck!

  • Hi,

    Thank you for the information. I am going to ask my rheumatologist about restasis next time I see her.

    He sounded like he wasn't worried about me, I just felt like he didn't even ask me useful questions to see if I had symptoms and because they are so wide ranging I didn't really know which things to tell him about. At least now I have educated myself I will be able to have a more productive conversation next time.

    I think you are right, I am going to write it down and I might take somebody else in with me this time.

    Thanks again and have a good weekend.

    Laura

  • I know what you're talking about I can't get good information from my doctor or my GI specialist they just don't even know what to do or what to call it. I have low CBC that just turned up and nobody's telling me to do anything in particular my general doctor recommended a blood transfusion but my GI people didn't say anything. And I'm not heard from either one of them lately I have a chart on the Internet where we can exchange information but I'm not getting any! So I am exasperated too!

  • It us really hard, I want to see a liver specialist as I feel like they are the ones who will make the most educated decision but my GP says just wait to see the gastroenterologist and if we don't get sufficient answers then we'll try the liver specialist.

    I hope your doctors get it together soon!

    Take care,

    Laura

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