It’s been several months of test as we try to figure out what is actually going on internally. It all started with the mono diagnosis. I wasn’t presenting with the normal mono symptoms (sore throat, swollen glands, etc), so they continued to run blood tests as they tried to determine why I was having such high fevers.
Blood tests lead to higher than normal liver enzymes. That result lead to an ultrasound of my liver. The ultrasound of my liver lead to a very unprofessional ultrasound tech saying “Huh, is that what I think it is?”. Let me pause for a moment…that is something you never ever want to hear being said when being examined by a doctor.
The ultrasound ended up showing a mass on my kidney. The mass on my kidney was then observed further via CT scan. This lead to a diagnosis of an angiomyolipoma (AML), or mass of fatty and muscle tissue growing from my organ close to 90% of the time these masses are benign and mine is small.
That CT scan of my kidney also showed small cysts in my lungs. That resulted in a significant concern for a diagnosis of Tuberous Sclerosis. Turns out that there is significant correlation between the presence of an AML along with cysts in the lungs.
A referral to the pulmonologist, combined with a pulmonology function test (PFT) showed my lung function in the 80-100 percentile range in all categories. This is great considering it also showed that I have several “thin walled cysts” throughout both lobes of my lungs. This seemed somewhat surprising to the pulmonologist who just kept saying “I don’t really know what to do with you.” I’m pretty sure she meant that in the nicest way possible. She did send me on my way with a diagnosis of Lymphangioleiomyomatosis (LAM). More on that in a different post.
Finally, two months later, the results of a genetic test came back NEGATIVE for Tuberous Sclerosis. This came as a huge relief!
Moral of the story:
- I do not have Tuberous Sclerosis
- I do have LAM
I am asymptomatic at this time and a treatment plan is coming. These are all good things.
Just Breath 