On November 4th 2022, in the middle of moving boxes into my apartment, I started to feel like I pulled a muscle in my back.
It quickly got to the point where I felt like I could not take a deep breath, and so I decided to go to City MD.
After performing an x-ray and considering every factor possible, the physician on call decided to perform a d-dimer test to see if my pain could be as a result of a blood clot.
Surprisingly, the test came back high, and he suggested I go to the emergency room. After they re-ran every test performed at CityMD, with all results being unremarkable, they decided to perform a CT Scan.
The scan revealed 31 scattered cysts throughout my lungs. 16 in the left and 15 on the right, with the largest measuring 4 cm in diameter. There was also a cyst noted in my upper abdomen.
To say that I was stunned was an understatement and so began a year and a half long journey to understand what was causing this.
The first pulmonologist I met with, thought this was a condition called LAM, but test results several weeks showed that not to be the case.
The second pulmonologist, if I am being completely honest, simply lacked experience as it became obvious to me that what I was dealing with was in no way "obvious".
Then on June 14th, 2023, I met my current pulmonologist who after reviewing all of the prior tests, stated that this may be Birt Hogg Dube Syndrome.
Unfortunately, the only doctor who could order the test was not available until July 3rd, 2024.
On July 15th, 2024, I did the labs and had the results back on July 28th, 2024.
Finally, I had confirmation, for better or worse that I had Birt Hogg Dube Syndrome.
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