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@ess77

@spiritnsoul and all
May I ask if you have a diagnosis yet? Seeing a pulmonary specialist? Rheumatologist? I have had Sarcoid since I was 40 years old…74 now. Hit lungs then, remission after 8 months of very heavy prednisone then off and on prednisone as it keeps hitting and my lungs are hit hard several times a year with bronchitis and/or pneumonia, asthma. Dry cough.

I found with this kind of disease, I had to take a proactive approach. I got very involved with my diagnoses and care.

Suggestion: you do the same . Become a 'difficult' patient, as a cancer doctor wrote in his book for patients with advice to ask questions, get answers, ask again and more until you get heard and are involved in your treatment. Ask, listen, understand, research using ONLY legitimate sources….i.e. Mayo Clinic, Cleveland Clinic, major university hospitals, etc…I go online to these sites and others as these, find info so I can understand what's truly happening in my body.

If your doc is out of town, speak with his partner or another person who can give you results. You can not sit and wait. Be proactive. Now. Be strong and learn and do well…blessings, Elizabeth

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Replies to "@spiritnsoul and all May I ask if you have a diagnosis yet? Seeing a pulmonary specialist?..."

Thank you so much! I called and asked the nurse to refer me to a pulmonologist. It is a rheumatologist I have been working with. My blood tests came back showing a low positive for scleroderma. I am not okay with waiting until December. I have read what this disease can do to your lungs heart kidney and digestive system. I have absolutely no skin symptoms. If nobody calls me back by Tuesday I will have to be more aggressive. The nurse acted like I was being over concerned and a nuisance. What I have found is that this is not a common disease and many doctors do not have a lot of knowledge on it. I just needed someone to tell me it's okay to be more aggressive and my own advocate I guess! Thank you!

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