Who Makes Health Care Decisions?

Yesterday I had a nerve conduction study and electromyography (EMG): they put electrodes on different spots to see if electricity will go through your nerves, and then they stick needles in your muscles, ditto.

“It’s not painful.” — the world wide web. 

When the study is underway, the surface electrodes will at times transmit a tiny electrical current that you may feel as a twinge or spasm. The needle electrode may cause discomfort or pain that usually ends shortly after the needle is removed.

That “tiny electrical current” hits me like a powerful jolt. At best I levitate right off the table; at worst, it hurts like hell. Oddly enough, the needles didn’t bother me. But the electrical current buzzing through them… yeah, I felt that.

“Your reflexes are working.” — the doctor.

By the time the test was done, I was simultaneously dizzy and vertiginous. Dizzy: feels like the world is spinning around you. Vertigo: feels like your brain is spinning inside your skull. Both: you don’t wanna find out.

I asked for a wheelchair to get to the car. (Catherine was driving.) The med tech took one look at me and got a nurse, who told me jokes and checked my blood pressure and let me rest for another half hour, and still the med tech wheeled me all the way to the car door.

Let’s just say the rest of the day was not particularly pretty.

I went to sleep dizzy, woke up with vertigo. Eventually I wove and staggered from bed to couch. Dogs know: Coco has been very attentive.

What’s really wrong with this picture: 

there is no medical rationale for the test.

Peripheral neuropathy makes my feet feel like they’re on-fire burning. I keep a bag of beans and rice in the freezer; it takes the edge off.

Nerve conduction and EMG can rule out nerve damage. Docs haven’t recommended the tests, because neuropathy, without nerve damage, is a common symptom of Long Covid.

But the insurer [I’m calling them “Mutual Farm”] wants me re-evaluated — less than a year after they started paying disability benefits. Send updates from all your doctors, they said. And get an EMG.

I can’t make this up:

Mutual Farm: Get an EMG.

Me: What’s an EMG?

MF … aahhh, electrosomething, I dunno…

If Mutual Farm says get an EMG, and I don’t, they can say, no benefits. They’d probably lose if I fought it, but they’re gambling on that being just too hard.

So, I got an EMG, and I crashed. The technical term: post-exertional symptom exacerbation. Six hours of neuropsychological battery, two weeks from now, is also going to take the stuffing out of me, and I’ll crash again. The more often I crash, the longer it takes to “recover” to post-covid normal. And the more likely I end up at a lower baseline.

In other words: to protect their profits, the insurer is damaging my health. 

Covid Diary

I have been wanting to write about what it’s like with long COVID, but I don’t have much energy to be on the computer. I don’t really know where to start so I guess I’ll start at the beginning.

In January, I was in great shape. I was living in Germany without a car, so grocery shopping, weekend sightseeing, and all my day-to-day activities were done by bike, by train, and/or on foot. 

In February, after returning from Germany, I went to an academic conference that I traveled to by bike, train, and bike, with luggage. I was one of few people at the conference who masked, and the day after I got home, the symptoms began. I was sicker than I’ve ever been, despite numerous bouts of walking pneumonia and bronchitis that exacerbated my underlying asthma.

I recovered from the acute infection after about three weeks, and the weird symptoms began. My vision is wonky, I get short of breath on climbing a flight of stairs or unloading the dishwasher, my feet often feel like they are on fire. My brain is deeply foggy. Working at the computer wears me out, whether it’s writing email, watching videos, or trying to have a zoom call. Reading? Sewing? My vision goes even wonkier.

The GP said take this new medication. The insurance company said “no.” 

The pulmonologist said “rest.” For six months to a year. 

The occupational therapist sent me to a fancy eye doctor who prescribed fancy expensive glasses that I am hoping to pick up soon. Maybe they will help with the fatigue, with writing and reading.

The physical therapist sent me to a cardiologist who prescribed a bunch of tests and said, get some exercise. The insurance company said, in a recorded message, “no” to I think one of the tests. Maybe more. Like I said, brain fog. I didn’t know the message was going to be recorded and I didn’t write anything down and it was not repeated and I hung up and wondered what just hit me.

I am still waiting to see the neurologist. I was “lucky” to get an appointment in the middle of June, after my GP referred me in March.

And that’s it for today. I am worn out. Maybe more another day.