I have recently been diagnosed with CSS
It took 20 years!
It started with severe allergies, poorly controlled Late onset Asthma, Chronic sinus infection( not relieved with 12 surgeries ), and GI problems. For over 20 years, I suffered with all of the above! I been accused of not taking my Meds, even though I gained a ton from prednesone. I coded a few times with no explanation, so I have been accused of taking something to cause it. Almost every ENT accused me endlessly of using cocain or something up my nose when I have never touched the stuff!!! I couldn't snort anything through my nose bc I can't even get air in it!
Recently, what lead to diagnosis, I have been experiencing global body aches, chills, fever, sweats, purple skin bumps on my elbow with inflammation , somewhat looking like MRSA or spider bite, syncopy...
For a little while, my lungs were actually doing better until my last hospitalization. I was experiencing chest pain, coughing up blood, high blood pressure and was admitted ( for the millionth time- I live in hospitals ) My lung x-rays showed small leisions back in 2007 and I was diagnosed with Bronchiectasis. This tine, My x rays showed large masses of leisions bilaterally! I had a lung biopsy and blood tests. High number , over 500 eosinaphils and lung tissue showed same. I was finally diagnosed and Rhematoid doctors were brought in. I just started chemotherapy drugs and still Ferlinghetti like crap every day! Fatigue, body aches, pressure in chest and GI upset. I couldn't start chemotherapy right away bc as a complication from being on antibiotics and steroids for 20 years, I had 3 active strains of MRSA in my lungs that required strong antibiotic treatment with a pic line before I could start surprising my immune system with chemotherapy . I have been sick for 20 years with no answers and at least now they know what I have. I will no longer be accused of crap I don't do and I hope for remission.
good luck with diagnosis and treatment!