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Sarcoidosis Message Board
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Old 05-21-2011, 12:30 PM   #1
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Join Date: Feb 2011
Location: Austin, MN
Posts: 7
rdahn HB User
Newly diagnosed w/Sarcoidosis, Disability

I have just been diagnosed with Sarcoidosis with Idiopathic Fibrosing Mediastinitis. Since my CT scan in 2008 my new diagnosis was detected by a new CT scan and shows that the disease has progressed to my spleen (scaring due to granulomas) and they also detected probably renal cysts. I will be seen again in 6 months with another CT to see if it has progressed any futher. No treatment as of now. I have been on oxygen due my shortness of breath and the collapse of my left upper lobe in my left lung and partial collapse in my right lung. Other disagnosis: joint pain (arthritis), GERD, COPD. I don't know what the future brings for me all I know is that there is no cure and limited treatments available. If anyone else has any information or comments on this disease, all would be appreciated.

 
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diane1940 (05-24-2011)
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Old 05-24-2011, 05:34 PM   #2
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Join Date: Jan 2009
Location: everett wa
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diane1940 HB User
Smile Re: Newly diagnosed w/Sarcoidosis, Disability

Hi Deae, I don't know alot about this desease but my daughter was diagnosed with it 5 years ago, It got pretty bad with different symtoms but the good news is that although there is no cure, it does wax and wean, Get s better and worse at different times. She has b een in remission and is very lucky . I just want you to know that there is a chance it can go into remission,Too bad they only grant money to study some deseases and not others,. My thought s are with you, I am new to this board but I can tell there is alot of moral support here'
Diane

 
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