Introductions and Being Your Own Advocate

Hi everyone!

I thought it might be time to introduce myself. My official diagnosis was finally confirmed this week. I have PSC/PBC overlap. So… I’m not technically just a PSC’er (Please don’t kick me out :wink:

I have been frequenting this forum for some time since I discovered my elevated liver enzymes. I do pray for all my PSC brothers and sisters often. This is a heavy burden for not just us, but our families as well. But it is also a mixed blessing. I know that sounds crazy. It has definitely taught me to appreciate what is truly important and to take one day at a time. I’m not going to lie; it’s hard. I’m certain those of you who have been dealing with this longer understand that better than anyone.

What I do want to say is that this forum has given me hope. I can see that it has given others hope as well and that is a beautiful thing. I’m thankful every day for its existence.

I’ve had a journey getting fully diagnosed. I am certain many people have had the same experience. My advice is to get fully armed with the facts of your disease(s). Do not solely rely on the doctors knowing the best course of treatment. You have to be your advocate, and in some cases, you have to be ready for a fight.

So here is my journey. I hope it helps in some small way:

My GI specialist thought I just had PBC. He wasn’t going to order an MRI. I have UC. I had been reading about liver disease once my AMA came back positive. That’s when I found out about PSC. I thought… nah I can’t have that. You can’t have both… right? What kind of unlucky snowflake would you have to be? Well… I demanded an MRI just to be on the safe side. It came back with strictures. I immediately went down a rabbit hole to try and find another cause, anything other than PSC, because that’s just crazy. I mean, I even considered tapeworms :smile:

My GI specialist was puzzled by my results so he did the right thing and he offered to send me to what he called a super specialist. So I went to the super specialist. Upon meeting him he said to me: Oh so you have a liver disease. I said: I think I have two. He laughed at me and not in a good way. He proceeded to tell me that you can’t have both PSC and PBC. He explained both diseases to me like someone would do a five year old. He mocked my GI specialist. And then I discovered, after waiting two long weeks for this appointment, that he had not reviewed my records. He was doing it on the fly while I sat there pretending I knew nothing about either disease. By the time I had met him, I had devoured every up-to-date medical journal and case study I could get my hands on. I knew PBC/PSC overlap existed. But I also knew it could be AIH since it can throw up AMA. So I decided to listen carefully to what he had to say, aware I needed specialized blood tests and a possible liver biopsy to narrow it down. Once he told me that it didn’t matter, that Urso was the treatment for both, I knew I needed better care.

So I went back to my GI specialist and he offered to send me elsewere. I cannot stress enough how important it is that you have a doctor on your side like this. He knew he couldn’t help me, but he was determined to get me the right help. So I sought out better care and the doctors came to the diagnosis pretty quickly after specialized blood work. I may still need a liver biopsy just to absolutely confirm there is nothing else going on.

If I can stress one thing to every new person who comes here seeking answers it is this: Learn everything you can about your disease(s). Be your advocate. Be respectful but understand that rare liver diseases mean just that. They generally are not a GI specialists specialty unless they say so. I do not believe doctors mean harm. But they can do harm without realizing. Push for blood tests (these are just some examples), IgG 1-4, AMA, ANA, just to name a few, MRI especially if you have UC, genetic testing, A,D,E,K your fat - soluble vitamins, smooth muscle and don’t back down. Understand what blood tests you might need and why. Treatment, as soon as possible, is so important. Also, try and keep up-to-date with the latest treatments. BE YOUR ADVOCATE. And remember that you are not alone. Do something every day that you love. Ask for support when you need it. Most of all: BE KIND TO YOURSELF. You did nothing to deserve this.

Much love and best wishes to you all,

Kim

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Kim,
Hello. Thank you for your excellent post and for sharing your journey to your PSC diagnosis. Everything you said was spot on. I’m glad you persisted to find the right specialist for you! Please continue to be apart of our community here. I started out just as a patient but found over time that the more I helped others with information on PSC, the more rewarded my own life was as I fought with this disease for many years. I believe communication with your family and friends at least for me was what I needed. This is not a disease to hide in a box and pretend it will go away, for it will knock you down if you aren’t prepared.
Keep in touch with us here and if there is anything we can do to help along your journey please do not hesitate to ask. Take care.

Mark
PSC 2011 / Liver Transplant 2015

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Good advice. I was three years after dx and had to request to have my A, D, E and K levels tested. My D level was 9 when the lowest normal range is 30.

I was told during a hospitalization that I would have a vascular test of one of my legs. At the test site, the tech was working on the other leg, so I questioned her. She looked at the orders and she was working on the correct leg. Later I had to go back there to get the test on the correct leg.

While kicking around several ER rooms, I was told I was to be NPO as they thought an ERCP was imminent. Two hours later, they brought me a lunch tray from dining. I reminded the nurse, so she checked and said the orders had been changed, that the doc was planning on seeing me the next day.

Gotta ask and make sure they are making the right decisions for you.

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