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Sarcoidosis Message Board
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Old 11-04-2007, 04:55 PM   #1
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Join Date: Nov 2007
Location: Ramstein, Germany
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natedory HB User
Stage 2 pulmonary sarcoidosis

In February of 2006 I had a lung biopsy via bronchial-oscapy under conscious sudation which confirmed pulmonary sarcoidosis. Radiology reports via x-ray and CT-scans show bilateral spinical-legions in the lungs and swollen hilar-lymph nodes. In the past 18 months I have 95% lung function based on past and present PFTs measure against my first PFT in February of 2006. I am nearing my 2 year mark with no change in sarcoid scaring due to granulomas forming in my lungs. Based on literature and medical community very little is known of what initiates/causes sarcoidosis. Additionally I would agree environmental and occupational factors may be the root cause for sarcoidosis. Furthermore, most demographical studies identify gender and race which are at high risk for developing sarcoidosis. For example;

I am a 35 year old white male of Scandinavian decent who has lived in North and Central America and Europe in the past 13 years. To add to all the complexity of sarcoidosis most research sources suggest sarcoidosis is not congenital. I disagree due to the fact my mother (60 yr old female of Scandinavian decent) has Stage 3 sarcoidosis which means granulomas has infiltrated all her vital organs. If you were to formulate a parallel of environmental and occupational factors between my mother and I you would discover the following:

My self:
[LIST][*]Occupation: Aircraft Mechanic[*]Environmental: Lived in Central/East/North Texas, Northern California, Panama, Germany

Mother:
  • Occupation: Nursing Professor, RN, MSN
  • Environmental: Lived in Northern/Central/Southern United states and 6 yrs in Pakistan

Now the BIG question. What does nursing and aircraft mechanics have in common that enables the development of sarcoidosis? Environmental commonalities are; born in the same city and attended the same high school in east Texas. Our birth place less than 2 miles away from an oil refinery which may posse an environmental threat to enable sarcoidosis. We also attend the same high school in east Texas which some medical professional suggest pine pollen to a sarcoid enabler.

I need to know if congenital factors are a possible link to sarcoidosis? This is a nasty disease that is incurable with minimal treatments to decrease symptoms. If there is anyone else who suffers from sarcoidosis I am interested to know if you know of any alternative medicine/therapies that any one has experienced in the past or present time.

 
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Old 11-08-2007, 07:42 PM   #2
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Location: Pewaukee, WI USA
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Bamboo HB User
Re: Stage 2 pulmonary sarcoidosis

I knew a Caucasian woman of Northern European descent who had sarcoidosis. Her husband had worked in shipyards in Seattle. I know there are (or were in the 50s and 60s) many chemicals and carcinogens present, including asbestos.

I have no idea if this information is helpful, but I wish you good luck!

 
Old 12-15-2007, 12:41 PM   #3
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Re: Stage 2 pulmonary sarcoidosis

I am a 57 year old woman with sarcoidosis and I am of scandanavian decent. I also worked at a chemical plant. I was in the office but exposed to fumes from the plants. I also have emphysema and bronchiactesis. I believe my mother had emphysema and/or sarcoidosis but she was never diagnosed either. She died in 1990 and I don't believe CT scans were done as often as they are now.

Is your mother on prednisone? That is the only thing I believe they can do for Sarcoidosis. Does she have the rash? I have red spots on my legs and the redness in on my face over my cheekbones.

If you find out any information about this disease please post it here. I don't think there is a whole lot on the website about Sarcoid.

Linda

 
Old 12-18-2007, 11:40 AM   #4
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windsey728 HB User
Re: Stage 2 pulmonary sarcoidosis

Ok, this is really strange. I grew up in East Texas. I dont live there now currently but still visit. I am currently getting tested for Sarcoidosis. I have had some symptoms for over a year and I am getting an x ray this week. Hmmmm.......????

 
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