I ran across a great community website that has lots of support for those with sarcoidosis. When I joined I almost instantly had contact with multiple people with sarcoidosis who were willing to talk openly about some of their experiences. Amazing stuff! After talking with everyone I really don’t think I have it that bad so far. Check out the site if you have a minute. It is…
http://www.inspire.com
The biggest thing I am finding is that people are being misdiagnosed like crazy and sometimes for years! In all that time it gets worse. Apparently a chest x-ray is one of the key tools for finding sarcoidosis and is often how it is found. That is how mine was found. If my ER doctor hadn’t ordered that chest x-ray they would have just treated me for swollen ankles and sent me home. Who knows how long it would have progressed before the actual correct diagnosis was discovered. That great ER doctor just happened to have had a relative who had sarcoidosis so that is why she ordered the x-ray. Wow!
My suggestion to everyone is don’t just take what your doctor says at face value! Find a speciallest who has lots of experience with Sarcoidosis. They say medicine is a “practice” not a science. I don’t buy it. Find a doctor who is done “practicing” and is now “experienced” and “curing”. It’s all about getting someone who knows what they are doing.
Also there was and interesting development today. My whole family has had strep throat and this morning I woke up with mine sore. I called in to my doctor and explained what was happening and express my concern over having the prednisone suppress my immune system. He agreed and called in antibiotics without even testing me, so I don’t know for sure if it is strep. If not it is at least a virus. I haven’t taken the antibiotics yet (I will after this blog) and I have noticed something. My ankles have begun to burn a bit like they do when the sarcoidosis starts to kick in. I have felt this twice now. The first flair-up. Then again when the first prednisone ran out (2 days before I got more) and now. I am also noticing the congestion in my chest again.
I know the sarcoidosis is my immune system in overdrive, and I am guessing that because I am sick it is kicking of my immune system to be stronger then it has been over the past week which is beginning to inflame my ankles. This would make sense to me because I think my infected tooth is what kicked off my big episode to begin with. It will be interesting to see what happens. If I am right, and if this is strep and not a virus, I should see the pain in my ankles start going away in a day or two when the antibiotics kick in. This will be interesting to see.
Hang in there everyone! Keep pushing!
Michael
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