Frustrated

We woke up early for my last cisternogram. My lower back is screaming. This scan was a little longer than the last two.


Afterward, we came back to the hotel and we both slept. The scans should come in soon. I have another appointment this afternoon for the chronic fatigue/ fibromyalgia doctor.

Well. It’s 1:50 and I have the results. The radiologist can’t find a CSF leak, even though I have  every symptom. The neurologist is going to put me on a new medication for migraines. I fall into the category of ”new daily headache”. I’m frustrated, my labs show an infection. We will see what the chronic fatigue doctor says. Maybe they can schedule me to see an ENT and an internal medicine doctor.



Ask and ye shall receive! The chronic fatigue doctor was extremely kind and incredibly helpful. She is an internist and explained a lot of things that made sense. She broke down how the central nervous system works, firing or misfiring signals in our brains. She also talked about my mini sleep study. Initially, we thought everything was normal, but it turns out its not. I fell below normal range on my O2 levels (as low as 80%). Plus my heart rate was all over the place (as low as 50, but the high was 100 bpm). She ordered a sleep study for me, but wants me to do it back home. Once I send her that information, she'll be able to officially diagnosis me and that opens more doors for treatment options.



Tonight, I'm gonna back to the hotel and talk to the kids. We all miss each other so much!! They’re just ready for mommy to be home.