Well, I just went to my transplant doctor today and talked to him about my fun life.
I told him about all of what had been done since I saw him last. He was concerned but still kept claiming that he did not have a diagnosis and that it could be PSC or PBC or overlapping of the two. Now I get to have more blood work done again (of course, since that is an on-going event in my life) another ERCP and a MRCP.
The most annoying thing he kept saying was "I don't look sick, but inside I am sick." I already know that I am sick. The most I look is very tired half the time. I mean, I have been having a nice affair with napping lately. I tend to fall asleep with anything lately. I even told him that I had to drop my working from 40 hours to 25 hours and that is getting too much for me. He just kept saying that I am still working so I am not doing that bad yet. And that diagnosing this is hard considering there is soo much that may be overlooked or anything. My numbers just keep going up and up and I don't know what or who to turn to anymore. So I am going to just become more of a guinea pig until he feels he is done with testing me. And finally diagnosing me.
So that is my life in a nutshell as of now.... Kathy
I agree with Stephen here... a PSC specialized GI would be the way forward. Especially if the diagnosis is confirmed as this is one individual you will build up a relationship with over the years, You want he / she to be someone you are comfortable with, can trust and knows PSC.
Hope all goes well and that your doctor is able to at least give you a definitive diagnosis soon. I know how difficult it can be hanging in the middle.
I agree with the two above. It sounds like you might need to get another doctor. May I ask where you are being seen right now?
It was comforting for my boyfriend and I to go to Mayo clinic in Rochester, MN and meet the real experts on PSC. It is such a rare and complicated disease (along with PBC) I'm not surprised that someone who isn't a specialist is struggling with your case. Don't let yourself be a guinea pig!!!
Hi Katsy. Firstly, my heart goes out to you I can really sense your frustration! Well I agree with all the comments here, I would go to a different doctor. My first doctor I was seeing saw my elevated liver enzymes and told me I was an alcoholic. I told him I don’t drink and he didn’t believe me and gave me a list of rehab centres to go to and a script for antidepressants ( he said I was in denial about the alcoholic thing!) I went and found a new doctor who referred me to a Gastroentologist who knew a lot about PSC. This specialist was very kind to me & I am seeing him and a hepatologist & they give me an MRCP every year and monitor my crohns and PSC. Looking back, my original doctor wasn’t to blame for not knowing. My liver was like an alcoholic’s liver and he did what he thought was best. What I am trying to say is that as PSC is so rare, it would pay for you to look around and find another doctor who knows about it. For your health and happiness. wishing you all the best
Katsy,
I hope you have found a new Dr. Gage my son had the itching & rash on his feet off & on for about 4 years. His primary kept treating him for athletes foot. Our last visit to that Dr. I asked for a full blood work up. He declined. None of the medications they prescribed or treatments worked. He developed Mersa repeatedly scratching so bad. When the rash spread up his legs two years ago I took him to the hospital ER. Same diagnoses. Next day we were at the walk in clinic. Still the same diagnoses. I opted to let him finish his hockey tournament that weekend because they said there wasn’t a worry of infection spreading. I caught the last 5 minutes of his game & I looked @ my sister & dad & said I have to get him off the ice now. Something’s wrong. They thought I was crazy. I said look @ him. That’s not asthma. Something’s really, really wrong. He was scheduled for his physical for football the next day. Nothing detected other than his heart murmur. My gut kept telling me something was wrong. Gage started throwing up @ night & was drastically losing weight. I thought to myself Gage is either experimenting with drugs & alcohol or he has cancer. I scheduled an appointment with a new Dr. & it was one appointment after the other for a solid two weeks. We received confirmation on day 3 I think. I asked for a second opinion & told both the GI Dr. & his new family Dr. It wasn’t personal it was my sons life they were talking about. Seattle Children’s & his Dr.'s here saved his life. His blood work originally was scary. I’m not thrilled with his family Dr. Lately but I pick my battles. My point is don’t wait like I did to find another Dr. It’s your life. I live with guilt daily thinking if I’d had only pushed harder when he was a baby maybe his UC would have been diagnosed. Maybe we wouldn’t be where are today. Take control. Journals help me. I write down stress factors, diet, mood swings, sleep patterns. Remember Dr.'s are human. They don’t have all the answers nor do they always make the right call. I’d follow the advice I’ve been given… Ask, ask, ask. We are paying them for a service.
