I saw my gastroenterologist today. I seriously love this guy–he’s the best doctor I’ve ever had. He listens, he actually cares, and he works hard to find solutions. I wish I could clone him for various specialties and just see clones of him with different specific knowledge sets.
(Admittedly, I also like him because he rants, so we’re kinda kindred souls there. Today he ranted, without my even saying anything, about how poorly they treated me in the ER when I was there most recently, the debacle with the antibiotics that left me literally full of shit to the point of severe pain.)
He’s really concerned about the fatigue and weakness too. I was afraid he was just going to blow me off since my labs all came back normal–god knows I’ve had plenty of doctors do that to me. But he didn’t! I cannot even describe the sense of relief there. He didn’t just think I was a depressed hypochondriac! I mean, that’s how all doctors should treat their patients, but sadly it’s very, very rare, especially if you have a history of mental illness.
In true House, M.D. fashion, he ruled out lupus and similar autoimmune diseases. I made the joke, “Come on, Dr. House, it’s never lupus,” and he got it, so more gold stars in my book. My sed rate and CRP (markers of inflammation) aren’t elevated, so it’s not likely to be another autoimmune disease, although he did say that it’s still possible we’re getting a false negative because I’m on immunosuppressants and steroids.
There are several possibilities he mentioned. He seems to think there’s a strong chance that the 6-MP is causing this, but he’s not sure. We lowered my dose the last time I saw him, 6 weeks ago, but I didn’t get any significant improvement. But he mentioned possibly taking me off it altogether, which makes me nervous. The combination of Humira and 6-MP is the only thing that’s gotten my UC under any sort of control, and I’m afraid I’ll get really sick again if I have to go off it. To his credit, though, he totally understands that and is concerned about the same thing.
He also thinks it might be somehow related to my MTHFR polymorphism (aka the motherfucker gene). For those of you who aren’t familiar with that, I have a genetic mutation that makes my body incapable of breaking down folic acid, which can cause problems from heart defects to depression. My gastroenterologist was actually familiar with it because it also increases the risk of colon cancer, which is just awesome for me. He said he’d need to do more research on that. It’s still relatively unknown, and there’s not a lot out there from valid medical sources.
There’s also a small chance that this is somehow a result of my brain surgery, although that’s highly unlikely. I was diagnosed with an arteriovenous malformation in the left frontal lobe of my brain when I was 17, after over a year of worsening neurological symptoms that got blown off because I was mentally ill and therefore assumed to be attention-seeking. (See why I’m excited when doctors don’t blow me off?) This is unlikely to be the problem since it was surgically corrected when I was 18, and my three-year angiogram (the definitive test for AVM’s) was clear. There’s a very slim chance that the surgery could’ve left scarring or something, but the frontal lobes are mostly associated with executive function and language skills, not motor skills. And since they only operated on the left side, any weakness would be on the opposite side of the body; i.e., my right side. My weakness is bilateral.
The other possibility is something neurological, and since it’s not his area of expertise, my gastroenterologist couldn’t really speculate as to what. So he’s sending me to a neurologist. He’s going to talk to my primary care doc and see if they can find someone good for me.
GI Doc: “I want to find a neurologist for you who’s genuinely interested.”
Me: “By that, do you mean not an asshole?”
GI Doc: “Exactly.”
I know I should see this as a chance to maybe get some answers about what’s going on with my body, and maybe even treatment that’ll help. But mostly I just don’t want to go. All the tests, the pain the fear…and I’ll probably just find out I have something else incurable. I just can’t deal with having anything else wrong with me. I feel way too broken already.