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Scleroderma and Incidence of Airway Disorder

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Good Morning!

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. 

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Hi MRussell,


Welcome to these forums!!


I'm sorry to hear that you've had worrying health problems and have felt so unwell.


Unfortunately, autoimmune diseases are notoriously difficult to diagnose, not least because they affect everyone so differently. I have lung involvement and although in the beginning I did feel very unwell and poorly, my symptoms were not the same as you're experiencing. Rather, I presented the classic shortage of breath and dry cough; there was never any suggestion of my airways collapsing.


Although it could be that you could have the beginnings of an autoimmune disease, there are also many other possibilities, so it will probably be necessary for you to undergo more tests to try and get a clearer picture of the problem. Also, although blood tests can be helpful, they're by no means conclusive, as it's perfectly possible to have negative antibodies and yet still develop the disease and vice versa.


We do have a medical page  "Preparing for Doctor Appointments" which I hope you'll find helpful and informative. Please do let us know how you get on with your appointment.


Kind regards,

Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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