Support, The Right Doc & New Developments

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

The Basics… Food and Sleep

They call prednisone the devil’s miracle drug and I think I am beginning to see why. Taking it has completely removed all of the symptoms of sarcoidosis, but has replaced it with a totally different set of symptoms. It is like trading the pain and can’t breathe disease for the acid indigestion, ever hungry, mood swinging, heart pounding can’t sleep disease! I think that there are actually more side affects with the prednisone then the sarcoidosis. Hay but at least I can breathe and walk!

Last night was one of the worst. I just sat there staring into open space trying to sleep but couldn’t. I might as well be trying to sleep while going for a walk for as much good as it was doing me. So now the problem is that I just got home and could fall asleep right now, but if I do I will wake up at 11:00 PM and won’t be able to sleep. So for now I get to hold out and hope to be tired tonight.

The other side effect that really has been troublesome is strange endless hunger that if you don’t feed turn into storming acid indigestion. I must have eaten six Rolaids but they aren’t being very effective at stopping the problem. I’ll have to try Tums. When I have my next doctor’s appointment I will ask him about other medicine. Don’t want any strange interactions.

I have a dentist appointment tomorrow to check on a troublesome tooth. My dad had sarcoidosis for 10 years! During this time he had a tooth that was drilled and patched wrong so that it kept a bit of infection festering at a low level under the tooth. In the end it swelled up and the tooth came out, once it was gone his sarcoidosis went away. Although there is no real studies or anything conclusive that would link the two there is a general thought that the tooth problem kept irritating his already hyped up immune system and keep this sarcoidosis going. My sarcoidosis flared up for the first time right after I had an abscess tooth. They may not be related but I don’t want to make a 10 year mistake, especially when it is so simple to check out. So for now I am going to aggressively treat this. I’ll let you know what we find.

One thing is for sure. I have got to get into a better eating and sleeping rhythm.

Michael