Sarcoidosis - my story, my thoughts.

Back in 1997 or so, I developed moderately painful swelling in my ankles. This happened to occur shortly after a nation-wide round of laboratory tours at Boeing, my employer. As part of the merger with McDonnell-Douglas, I was asked to be part of a team that assessed all the labs to make recommendations about lab closures and consolidations.

I'm a fairly healthy adult white male, about 36 at the time. I'm not a runner or exercise freak, but I'm not exactly sedentary either. At first I attributed the swelling in my ankles to simply "over doing it", being on my feet too much, walking too much, maybe air travel, etc.

But it didn't go away. One of the oddest things about the swelling (to me) was that it was worst first thing in the morning. I sleep in a normal bed, so my feet are more or less level with my heart all night. You would think any sort of 'normal' swelling would subside with elevation, but that's when my ankles were at their worst! Getting out of bed and bearing weight on my feet was painful. Not an awful, debilitating pain, but enough to let me know that something was not quite right.

After about six weeks of this, I went to see my primary care physician. I explained my symptoms to him, told him I could manage the pain if for some reason this was my "new normal", but that I feared something systemic, like maybe gout. I remember to this day his response, "It's not gout. We're going to have to run a bunch of tests, and when we're done, I can just about guarantee you it won't be anything you've ever heard of." He was right.

He cleared me for large doses of ibuprofen to manage the pain, and referred me to a specialist. That turned into a fascinating round of 100 questions:

I think there was more than one specialist in that chain, but eventually I had a chest x-ray. They spotted a small mass in my lung. That led to a needle biopsy of the mass while inside an MRI. Not much fun, but it beats invasive surgery.

The answer came back: Sarcoidosis. This was a bit of a surprise, as sarcoidosis isn't really thought of as a 'white guy' disease in the USA - per

At the time of my diagnosis, I was told that about 85% of the time, the disease fades on its own, maybe 3% of the time it was fatal, and that in the rest of the extreme cases there were some treatment options. For mine, we just let it fade. I went to a respiratory therapist for several months to monitor my lung function and then went on to 'live my life'.

Click here for my article on Episcleritis and how it relates to Sarcoidosis.

Click here for my article on Sarcoidosis and the incidence of it at Boeing in Seattle.

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