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Is this sarcoidosis?

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Old 11-04-2010, 07:57 PM   #1
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mlinn93 HB User
Is this sarcoidosis?

I think I have sarcoidosis, but I want a second opinion before I go to the doctor because the symptoms can be so general. Just warning, this is long.

In August of 2007, I started getting really bad pains below my ribs on the right side. The pain was constant and made worse when I ate or when I laid on my stomach. I was tested for gallbladder disease and the tests came back negative.
The pain eventually moved up into my ribs. It was a constant pain, but several times a day it would flare up and be really bad for several minutes at a time. Sometimes the pain would last almost all day. I wouldn't be able to get out of bed, sometimes I couldn't even sit up in bed. I was tired all the time because I couldn't sleep at night because the pain was so bad. No pain medicine would make it any better.
Towards the end of the year, I ended up in the ER twice. Both times I was having trouble breathing. One of the times, they did an ultrasound on my abdomen. Everything came back okay, but one of the doctors said it looked like my spleen was enlarged, but the other one said it didn't look like it was. I never heard anything more about the spleen. They just have me pain meds and told me to go back to my family doctor, who wasn't doing anything for me.
My family doctor told me to try physical therapy. I went 3 times a week for several months doing various things. Everything made it worse. I had massages, which were painful, hot packs, electrostimulation, ultrasound waves, and stretches. I eventually quit going because it was making my pain unbearable.
I was sent to a few different specialists. Everyone told me I was making it up since all the tests I had come back negative for anything. I had a bone scan, hida scan, numerous blood tests, ct scan, to name a few.
The pain eventually moved throughout all of my ribs. I was told it was costrochondritis, and was treated for that, but it didnt go away or get any better. The pain then moved the left side of my ribs, stayed there for a while, then moved to the right side primarily.
I was sent to a specialist at the University of Michigan and he wasn't sure what was wrong either. He had me have get an MRI. The MRI all came back okay, except they found a small cyst on my c7 spine, which he said a lot of people have and it's nothing to worry about unless it grows. A while after the MRI, the pains randomly went away.
It's been about 2.5 years since the pains, and I still get some pain randomly, nothing nearly as bad as it used to be.

For about a year I was doing okay.
Then in August of 2008, I came down with a cold that lasted for around 6 months. At first I thought it was just a cold, but after getting medicine for it, it didn't go away. I had a dry cough the whole time. I again was sent to different specialists and had a couple PFT tests. Of course, everything came back okay. They had me get a chest x-ray, which it showed up that I have a granuloma in my lung. I know its not big, but I can't remember the exact size. I thought none of it was related, until I started doing research. A blood test revealed that one of my immune fighting things in my blood was low but they didn't know why. I was tested for TB and CF. Both negative.

Now, starting about 5 weeks ago, I started having really bad headaches. Since then, it's been a constant pain. Sometimes it's dull, but most of the time it's really strong. There's been many days I have to miss school and just stay in bed. My family doctor couldn't give me the medicine he wanted to because I wasn't 18. He referred me to a neurologist. I just had an MRI on my brain yesterday, got the results back and everything is fine. I can't get into the neurologist until the end of the month.

With everything I've been reading, my symptoms seem similar to the symptoms you can have with sarcoidosis. I do plan on talking to my family doctor about it, but until I can do that I wanted an opinion.

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Old 11-06-2010, 08:00 AM   #2
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Re: Is this sarcoidosis?

There are a lot of disorders with similar symptoms, so having a hard time finding the problem is understandable. Have they checked into any of the autoimmune disorders? Things that come to mind would be Lupus and Fibromyalgia considering the pain, fatigue, and sleeping difficultly. You might peruse those boards and see if you have similar symptoms.
Hope this helps,
Best Regards,

The Following User Says Thank You to Sunsetnan For This Useful Post:
mlinn93 (11-07-2010)
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