A Typical Doctor Visit

Today, I wanted to talk about why it’s so difficult for Kate to get help with her seizures. It seems like it should be a simple thing, right? But for a long time, we didn’t even know they were seizures. We only knew that she would flip out and start running. It was a good couple years before we realized (and yes, she didn’t realize either) that she wasn’t doing on purpose because she was pissed.

Our first neurologist was a 90-year-old man with a stubborn streak that bordered on denial. He told Kate she had myasthenia gravis and put her some pills for it. He said take half of one every day and started scheduling her for tests. He acted like this was the case that would make his career.

Every single test came back negative, and the pills stopped working once the initial placebo effect wore off. But the doctor insisted that didn’t mean anything, that myasthenia gravis hardly ever showed up in tests, and we should keep doing everything he said.

It took months of tests and pills and wasted money before the guy finally sent us to a myasthenia gravis specialist he knew. The specialist informed us that Kate should have been taking like four to six pills everyday, and also if all these tests were coming back negative, Kate absolutely did not have myasthenia gravis.

We went back to her family doctor at that point. He had previously told her that she had mononucleosis, despite not being contagious. He also insisted that she probably had chronic fatigue syndrome, which near as I can figure, is actually not a disease but a catchall term for a collection of symptoms that doctors use when they’re sick of trying to figure out what the problem really is.

He is now insisting that Kate has multiple sclerosis and also CFS and just generally filling her head with paranoia about incurable diseases and making her think her life is over. He’s a blustering bully (also literally a rapist who can’t keep a his hands off his receptionists) who has to be right and refuses to listen, and as I’ve mentioned before, abuse is one of Kate’s seizure triggers. So one day, she just explodes and flees the office, banging into things as she goes. The doctor sends a formal letter to the house refusing to treat her ever again.

Shortly after this, we got hit by a hurricane and had to move in with my family in Missouri. While there, we went to see the neurologist in my home town. The nurse practitioner was a very polite, attentive young fellow who listened very carefully and promised they would do everything they could. The doctor ignored Kate, claimed he couldn’t help, and sent us away.

It was also while in Missouri that we first began to understand how food triggered these episodes. Kate went from barely able to walk even while leaning heavily on a cane to moving freely in about a month.

Also let me just clarify here. Kate was weak, physically. She could barely pull herself out of bed some days. But when a seizure hit, that didn’t matter anymore. She still does something similar, actually. Nearly broke her knee while running because she smashed into a wall and twisted it badly as she fell. Neither weakness nor broken limbs can stop her from running when she has that type of seizure. It’s like a fugue state. She’s not really aware of anything, and her memory will be patchy when she comes back to me.

Anyway, when we finally got back, we saw a doctor who barely spoke English. He was nice enough, but I’m not sure he fully understood the problem. He latched onto the food issue we’d discovered and put us in touch with a handful of new specialists. Kate was tested for allergies, Celiacs, neurological disorders, and I think a couple other thing, but I don’t remember. All negative. In fact, the last specialist we saw listened to Kate’s story and suggested we just try alternative therapies, like controlling her diet as we’d been doing.

By then, we’d done all we could think of, and our primary care physician didn’t have any new ideas. So we just that one specialist’s advice and focused on Kate’s diet. We got her going back to the gym, which helped further. She’d still enter the fugue state, but she’d  come out of it sooner, sometimes without running at all

While there, one of her sparring partners was a med student who was curious about this weird disorder. He told her the fugue state sounded like sn absentee seizure.

We now had a new direction to look in, but Kate wasn’t insured by her dad’s family plan anymore. And he’d been making such a big deal of blaming us both for her seizures and ordering us to see more doctors that the idea of doing so was becoming increasingly stressful. I was having panic attacks, and Kate didn’t want to leave the house except for gym. Even when we got her insurance taken care of, the idea of being jerked around by more doctors was soul crushing.

Then we were homeless. It was like flipping a switch. We didn’t ever have to succumb to their abuse again. Suddenly, everything seemed possible.

We got Kate a new primary care physician, and he was polite and attentive. They tried to do a nerve conductivity test, but Kate started seizing during it. (And the nurse practitioner thpught she was just shivering, but I guess we can’t have everything.) So the doctor gave the name of another specialist.

Now, I honestly can’t remember if I told this part of the story before or not. I’ve told a bunch of people.

Basically, the receptionist rushed Kate through some setup that involved being half naked in a freezing room while wearing only her pants rolled up to the knees and a rough dressing gown. Of course, Kate started seizing. The specialist made her wait for an hour, and then instead of noticing that she was in distress just demanded to know wjy the gown was on the floor. Kate attempted to describe her symptoms and was dismissed. She happened to mention we were living in a car, and the specialist decided that she was  schizophrenic. She told Kate to go to an emergency room because she was clearly having a psychotic break, and that her symptoms must be getting worse or we wouldn’t have been kicked out of the house.

As I’ve mentioned before, Kate’s symptoms have gotten about a hundred times better since we got out of that abusive environment.

She scheduled Kate for two conductivity tests and kicked her out. Total time: five minutes. And then they had the gall to charge our insurance company full price for that.

So now, we really don’t want to see anymore doctors again. We are still trying, but finding neurologists who’ll take her insurance has been…um, trying. Supposedly, you can check their website. There are eight neurologists in our area, and not a single one of them had a valid phone number listed. So for now, we’re back to our own brand of alternative medicine. It’s worked better than the healthcare system so far.


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