Mayo update #5 – Last one for the week

The doctors at Mayo have been amazing! The amount of tests and specialists he has seen in such a short amount of time is incredible. One good thing is neurology has cleared him – there is nothing wrong with his brain.

The most surprising news of all is that the doctors are not sure Joel in fact has lupus. Three rheumatologists, including one from UCLA, told us he has lupus so that is quite shocking to us. However, there are other diseases they think he might have. We will not know the results of those tests until next week. Also, his blood work does show some concerns with his immune system, but they ran out of time this week to get him to an immunologist. They recommended we find one here locally or go back to Mayo to see one to follow up with the issues.

One major problem is that the prednisone is masking symptoms and causing others (i.e. the tremors) – he needs to come off of it slowly. This is good because it’s such a nasty drug and we don’t like it but bad because it will make him very sick. The doctor said it will be “pure evil” coming off of it. Once he is off it, they can re-evaluate him based on symptoms.

A secondary issue has been found – Joel has severe sinus disease and he needs surgery. They have scheduled it for October at Mayo, but we may have it done here so our insurance can cover it. This is NOT the main problem though so they continue to test for the other possible diseases.

Although the experience was great at Mayo and we’re glad he went, we find ourselves disappointed with no concrete answers at the end of this week. We are praying fervently that the results that come in next week will show something that provides definite answers.

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5 Comments

  1. Praying!
    Jacksons

  2. Go see that immunologist at Mayo!! Sounds like they’re on *some* kind of track!

  3. Joel, we are praying for you and your family here in Wymore, Nebraska. God is faithful.

  4. praying, praying, praying.

  5. I have you both in my prayers. It was so nice to meet you both. Remember we are just a phone call away if there is anything at all you need.


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