Thread: Sarcoidosis
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Old Tue Aug 28, 2018, 03:17 PM
David M David M is offline
Join Date: Sep 2009
Location: Fayetteville, TN
Posts: 78
Sarcoidosis Diagnosis

Back in 1996, I had a strange bout with something for about 6 months that the various doctors finally concluded was sarcoidosis. Initially, it manifested itself with both my ankles becoming swollen and red (I mean, really swollen!). At the same time, I had a fever of around 100-101F, achiness all over, and I started coughing some (just an occasional cough at first).

Not knowing exactly what to do, my GP doctor gave me a course of steroids -- and the ankle swelling responded quickly to this. Just after this, a Rheumatologist examined me, took some blood, and noticed my cough. He quickly diagnosed me with sarcoidosis. The lung involvement increased over the coming months. I just remember coughing until I felt I was going to faint. I was sent to a pulmonologist, and he tested me for various things, including doing a bronchoscopy. I remember having a 100F fever for weeks on end... and feeling pretty "crummy."

Finally, after about 6 months, the cough and fever went away. The doctors said it was an "acute" case of sarcoidosis. Not sure why it happened, but it did.

A few years later (around June 2000), we first noticed that my blood counts were low enough to be concerned... and that is when my experience with pancytopenia began. (You can read my story and subsequent updates in My Story forum on this website.)

Was the sarcoidosis related to my pancytopenia? Do I still have some form of sarcoidosis? Is the sarcoidosis somehow CAUSING my pancytopenia? I don't know. For me, the doctors rarely consider or mention my bout with sarcoidosis, so I'd say they do not consider it a serious threat in my case -- and I'm not sure what they would do different if they did suspect sarcoidosis to be causing my blood problems.

Well, enough about me... I hope and pray that they can help you as you deal with your health challenges!
David M, reds/whites/plats slowly declining since 2000; hypo-cellular bone marrow; diagnosed Mild AA; low counts, but stable since 2009; watch and wait -- no treatments required to this point.
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