Early this morning I meet with a new neurologist, one that I have been wanting to see for a while. When he accepted my case and I booked my appoinment I felt like I was going to finally get somewhere. This is because he sees and treats comlpex disorders/cases. He would be able to work on my migraines, help me control my Postural Orthostatic Tachycardia Syndrome, and could determine whether or not I had Ehlers-Danlos finally.
So the night before the appoinment rolls around and I’m stressed and freaking out trying to get all my notes in order. My dad is trying to get me to calm down, reminding me he’ll be there the entire time so I’m not going to forget anything. Of course, then I have insomnia and nightmares like I do before every new doctors appoinment. I really hate medical trauma PTSD. The next morning its up at 5am, I have all my notes printed up, the paperwork filled out, and my medical history has been faxed to his office for him to review beforehand. I am jittery the whole drive there.
We get a little turned around because the building is so huge, but we make it on time. The office staff is nice enough. The waiting room is empty save for a tall, older man. We are taken to a smaller waiting area after my vitals are notated. Then, the doctor comes out to greet us and brings us back to his office, and I mean his office. There is a litte exam room attached, but we first sit in front of his desk and begin discussing my epic of a medical history. We go through the concussion, the POTS, the GI symptoms, the joint problems, all of it. Then he examines me in every which way possible, taking notes on the width between my eyes to my gait.
Then he says something that never even occured to me. I guess that’s why he’s a doctor. He asks “Have you ever been on Cromolyn?” You see, Cromolyn works by stopping the release of chemicals mediators from mast cells. It is used to treat a disorder where your mast cells are inappropriatly triggered and their chemicals released without reason; Mast Cell Activation Syndrome. And I don’t have that… at least I didn’t. The more this new neurologist talked the more things started making sense. I had rampant GI problems that worsened when I ate, I was allergic to nearly all adhesives (and I mean allergic), and I had pretty bad ‘allergies’ that seemed to flare randomly, in line with no particular season. Things were lining up.
Plus, the release of the chemical mediators from the mast cells have an effect on the autonomic nervous system, the system that POTS affects. When the mast cells activate, they cause the ANS to freak out. This causes, in my case not just POTS, but Hyperadrenergic POTS. Which is POTS but with an overactivity of the sympathetic nervous system. Basically I am always in “Fight or Flight” mode, and with that comes its own problems. But HyperPOTS also does another thing, it triggers the mast cells. It causes them to activate and release their chemicals, which include histamines among others. So the cycle continues: mast cells freak out the ANS, the HyperPOTS triggers the MCAS. We have to attack it from both sides or we are essentialy just chasing our tails. And thats what we plan to do.
Now the title of this post is “The Trifecta” and some of you reading this might already know whats coming next. Ehlers-Danlos, hypermobile type. My joints aren’t super hypermobile, but they do sublux alot and are no stranger to dislocations. And having some skin signs and familial joint problems, it makes sense. And having the other two most common commorbities that people with EDS have, the trifecta is complete. So, loads of info, some answers, a few referals, and two more disorders to add to my list and I’d say it was a pretty effective appoinment.
But heres the thing. I am not happy I now have more conditions; more medications to take, more treatments to do, more explaining every time I go to the ER or any new provider. I am not happy that my body decided to bless me with such lovely little blips in its functioning. But I am finally at peace now that I finally have answers. We have a pretty good idea of whats going on and we now have some plans on how to help me function as best as I can.