I’m sorry it’s taken me a while to write a Seattle update on my neuro appointment. More than a week ago, our internet line accidentally got cut during construction—you never realize how much you use the internet until you don’t have it!! 😂
Regarding the “new” symptoms I’ve been experiencing since April (migraines nearly every day, sluggish pupils, buzzing in my ears, loss of ability for my right eyeball to look to the right, diminished peripheral vision, etc), my neurologist at UW basically thinks this is either a very atypical case of Pseudotumor Cerebri OR some progression of the mitochondrial disease. 😢 But, he doesn’t know enough about the former condition as he is a neuromuscular specialist. Pseudotumor Cerebri is a disorder which mimics the symptoms of an actual brain tumor, so he is referring me to a headache neurologist at UW who can rule it out and also try to get my migraines under control. My pain dr. here switched me to a different migraine injection back in May, but it’s not helping.
Anyways, I’m so thankful this headache neurologist is the best of the best and a Top Doctor in the Seattle Monthly. 😊 I’m just sad that we have to go back up to Seattle, though, as it’s always pretty exhausting. 😞 Not sure when I’ll be seeing her, but I will keep you updated..
This appointment was a little discouraging and disappointing, but I’m grateful the Lord always goes before me. He is in control and will keep giving me strength to deal with this. Aside from these horrible migraines and neuro symptoms, I realized that 2022 has been the best year yet as I haven’t had any long hospitalizations, ER visits, or mito crashes (next month marks 1 whole year since my last surgery, too—the emergency cholecystectomy)! I praise and thank God for this wonderful gift. ❤️