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unicorpseboi · 2 years

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I really hate my neurologist.

I've had a series of upsets with my health for over a decade, and my primary and I have made strides in the last year to get diagnoses and undergo testing and see specialist after specialist.

I've had issues with hypermobility since I was a child; and this goes beyond being flexible. I was put into dance as a kid because I was pigeon-toed and had "flat feet," and my parents thought ballet would fix it. It didn't, ballet only exacerbated my issues that only now at the age of 24 - nearly 17 years later - I've finally gotten a name for. I have a connective tissue disorder. I was diagnosed with Ehlers-Danlos Syndrome; not that that has been the most welcoming - any outreach of support I've tried to grasp onto has been met with the community slamming doors in my face because I don't know which type for sure yet because more tests and specialist appointments and I live in America, yknow? But I'm just "really flexible" and even the EDS community has been very rigid and cold when I've been advised by my therapist to seek support circles.

I mention this because one of the other issues I've been having for years now is seizures. I've never had a doctor take me seriously when I brought it up; I have a few different psychological diagnoses, so usually I get written off as just having anxiety. When I brought up the "pseudo seizures" to my primary, he asked me to describe them, became quickly alarmed because "no, hun, that doesn't sound like pseudo seizures, that sounds like a clonic seizure, we need to get you in to a neurologist," and then 8 months later I finally managed to find a neurologist who was taking new patients. I go in and see this guy, he does the EEG, he doesn't tell me I don't have epilepsy, he doesn't tell me I do, he just immediately puts me on trokendi. Fucking Trokendi XR. My primary had tried getting me started on trokendi 8 months earlier to get me on something, but I had a really bad reaction to it and my primary took me off of it immediately. I'm having the same bad reaction, but it does seem to be the typical bad side effects that just come with this medication and the dosage adjustment because after about 2 weeks I adjust. But each time my neurologist ups the dose, the side effects get more and more severe. This time around I even started having issues with su*cidal thoughts. My neurologist won't switch my meds because technically I haven't had a seizure or a migraine since starting it.

Here's why I mention my EDS. This is a new concrete diagnosis for me. Like a month ago new. I've been on some pretty strong prescription pain meds for a while now though because before the diagnosis, we had no clue why I had such bad chronic pain and why I couldn't walk and it was worsening over the years. To keep me off of NSAIDS and away from opioids, my primary physician prescribed gabapentin cuz it doubles as a pain medication for fibromyalgia, which is basically a catch all phrase for "we don't know why you're in pain, we can't figure it out, but we know you are in pain." My neurologist told me that he noticed I was on a rather high dose of it, and I told him that yeah, it was hard to take because it would knock me out for the rest of the day and I'd have to sleep it off. So he told me to hand over the remaining medication I had, and he'd write me a new prescription for a slightly lower dosage that way I could still function if I needed to take it. I trusted him, he said the reason I had to hand it over first was because it was a controlled medication. The moment he had all of my pain medication, he decided right then and there that nope, I do not have this diagnosis that he is not qualified to make. That I'm just "really flexible" and that that's "a good thing." I can't walk long distances. I can't stand for more than 10 minutes at a time without my legs giving out from under me and making me fall. I have hurt myself several times falling in parking lots walking out of stores because of this. I have woken up several times with dislocated joints. I am beyond angry at my neurologist, but what am I supposed to do when the country I live in is so broken that the medicaid insurance I'm on isn't accepted everywhere, doctors refuse to take on new patients at the expense of chronically ill patients' health, and doctors abuse patients with no regard to consequences?

#vent #health problems #epilepsy #ehlers danlos #trokendi #neurology #neurologist #chronically ill #chronic illness #chronic pain #chronically disabled

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