2013 Mayo visit

I just read through all of Mayo’s tests and notes trying to figure out Joel’s week there. We’re still waiting for a few more to come through, but I’ll try to explain some of the major things we learned. First, once again, Mayo proves to know what they’re doing. I always encourage anybody who has undiagnosed health issues to go there. In just four days, Joel saw five doctors who ran countless tests.

A nerve conduction test showed severe nerve damage. The rheumatologist said this is most likely due to his repeat meningitis episodes and liver damage. And the pain he experiences is caused by the nerve damage. In the tests, Joel didn’t feel many of the nerve shocks. The neurologist said it wasn’t the worst he’s seen, but it’s definitely a big problem.

We both were crushed at the news the rheumatologist delivered. He thought, despite some of the indications of auto-immune diseases, that Joel does not in fact have auto-immune hepatitis or lupus. However, he could not explain what exactly it was. We didn’t understand that because many doctors have agreed with this diagnosis and the one medicine that works for Joel is an immune suppressing drug. After this appointment, we felt like we were at ground zero again, which was very tough to take. Interestingly, Joel’s rheumatologist here in Boulder didn’t think it was necessary to go to Mayo. He’s a great doctor, but I’m glad we didn’t listen and pushed the envelope with going to Mayo. I have mentioned this before, but it’s easier to face a giant when you know what it is or what it might do. It was also frustrating for me not to be there because I wouldn’t have let the rheumatologist get away with not explaining things or saying just go do more tests in Colorado like he did. My little golden retriever (Joel) is too nice to be pushy/bossy like I am.

The day after the rheumatologist, Joel met with a hepatologist, which is a liver specialist. His news was easier to take. He was confident that Joel has a liver disease, but we just haven’t found which one. He said auto-immune hepatitis was still a possibility, just not a likely one. He is going to get a tissue sample from Joel’s liver biopsy in Nevada to study it. He’s also doing some more tests that we haven’t heard the results of yet and gave us a few names of diseases to consider, but nothing concrete yet. Joel will need to find and see a hepatologist here who can monitor him and continue to run tests. The big concern for me personally is that they want Joel to stop taking the medicine that is working for him so they can look at his liver clean. It makes sense and Joel has already started the process, but I know what has happened in the past when he has gone off it and it’s never been good.

The other thing that complicates Joel’s case is that his immune blood panels still show major immune system issues. So he needs to see an immunologist on a regular basis in addition to the hepatologist. Thankfully, there is a Mayo doctor here in Longmont (thank you, Jesus!) that they have referred him to.

Basically all that comes down to is instead of a diagnosis of two auto-immune diseases, we’re looking at a liver disease with immune system complications and severe nerve damage.  So for now our plan is to basically see more specialists and run more tests with our new direction. And we watch and see what his liver does off the medicine.

Thank you so much for all your prayers! And special thanks to our friend, Jason Byrd, for going with Joel to Mayo. Sometimes I think, this has been going on for over 2 years now, how can we still not have concrete answers? And then I think about a dear, sweet friend of mine in Las Vegas who has struggled with a disease for more than a decade with the wrong diagnosis, medications, etc. etc. And the woman has more joy than anyone I know! Her smile and laughter always brightens my day. And the other thing I try to remember is that sometimes we just have to thank God for unanswered prayers, even when it doesn’t seem like it’s what you want at the time. He’ll show us our path in His time.

 

 

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1 Comment

  1. Goodness. So much.
    You are a couple of warriors, for sure. God’s got this.
    Just wish we knew what “this” IS.
    We are praying.

    De & Justin


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