Two and 1/2 years ago, I got a viral illness like a flu type bug....then, my life changed forever. After 4-5 days my fever went away but I was left with extreme fatigue and a horrible cough. (Prior to this virus, I was fairly healthy mother of 2, registered nurse working in an emergency department.) After 10 months of misdiagnoses, I found a physician who said I think you have "airway malacia" which is basically a collapsed airway. Sure enough, I do. Now 2 years in, lots of illnesses later...I live on antibiotics and steroids (but in all actuality steroids make me human again). Interestingly enough, I never get fevers anymore.
Now, 2+ years and a second bronchoscopy shows 70% trachea collapse and greater than 90% collapse in the left mainstem bronchus and 50+% in the right....my pulmonary interventionalist agrees there is more to this story and thinks my body is attacking itself - autoimmune disease.
My ANA is normal, my thyroid functions are normal (although I now have nodules), all my labs studies are consistently normal....I am currently awaiting the SCL-70 to come back. I will be seeing a quadruple board certified MD in 2 weeks. One of the possibilities has been suggested I may have scleroderma. I have no real skin issues at this point.
Does anyone else have a story similar to mine? I feel alone most days because I can not wrap my head around this. I am always tired and struggle. Any suggestions on questions for this physician?
I look forward to hearing from you.