Sick (of It)

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.



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6 responses to “Sick (of It)

  1. Despite the fear of going to an unknown neurologist and the tests that might ordered it sounds like a very productive office visit. I have said it before but I have to say it again I admire your courage dealing with so many conditions. I am a total wimp about even minor health issues.

  2. You have been so brave through all of this! I know it’s scary but you handle it with grace, So inspiring!

  3. You do get different treatment when you have a mental illness diagnosis. I see a big difference between the treatment I receive and what my husband receives especially at ER. I have found one really good doctor that treats me well and takes me seriously. PTSD has a huge effect on your physiology. Glad you have found one doctor that is making the difference for you. Good luck.

  4. First and foremost- Your GI is a rare find! He not only sounds wonderful with his rapor toward you but he sounds knowledgeable. I think its a good idea to go the neurologist to rule things out before you go off the 6-MP just to be sure. Your GI has your best interest at heart and clearly knows his stuff in my opinion.

    I have Crohn’s disease and like you, had lots of fatigue. I went to a infectious control doctor for a rash and he was the only one who seemed genuinely concerned at the time about my fatigue. He ruled out a bunch of stuff and then sent me to a rheumatologist. The short of the story I went through a lot of testing and nothing became of it and I hope that is the same for you. At the beginning of October I was at my wits end with my fatigue I went to holistic doctor and she examined me head to toe with all my symptoms and changed my eating habits drastically. I was on cimzia and 6-mp (100 mg). I went to the GI after a month and he wanted to increase my 6-mp. I don’t want to be on anymore of that stuff. About a month ago, I was forgetting to take my 6-mp because I was more focused on my diet. But one day I did take it and I felt like a SLUG! That was the day I decided it was doing me more harm than good. So there is hope that the 6-mp is the cause and that you will be okay without it, possibly even better!
    Wishing you health and happiness! I hope this information helps! 🙂

    • Oh, he is absolutely amazing. I feel so very lucky to have found him, and it was totally by chance–it’s the only gastroenterology practice in my area, so I would’ve gone there even if they weren’t very good.

      I wish I could afford a holistic doctor, but if insurance doesn’t cover it, it’s off the table for me. I’ve made extensive dietary changes on my own, but all they do is keep things from getting bad enough for an ER visit (most of the time, anyway). Nothing had made a big enough difference to put me into remission, and I’m actually afraid I’m heading into another flare–I’ve been having the early symptoms for the last two weeks or so. I’d love to go off the 6-MP, but I’m afraid I’ll get deathly ill again if I do. I’m already on Humira and Entocort in addition to 6-MP, so it’s not like we could add another class of drug to replace it. So then it becomes an issue of whether the fatigue/weakness is bad enough to risk a full-blown flare, not knowing how bad it could be if it happens.

      I’m curious what the dietary modifications were that helped you. (If you don’t want to share, feel free to tell me to shut up. I don’t mind.)

  5. Check out my blog called holistic healing! I did my best to outline my first visit with the holistic doctor with the intention in mind to help others that might not be able to afford it. I can afford it right now because I live with my parents and don’t have rent to pay which allows me to afford these visits.

    Keep in mind that I did not feel great instantly, I had to work out a few kinks and get used to everything and label checking because gluten and dairy find their way into everything. But I honestly feel a lot better than I have in a long time and I used be a skeptic about how diet or natural things along could help make u feel better, but I am a true believer now! 🙂

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