My Unraveling I had my health. I had a job. And then, abruptly, I didn't

https://nymag.com/intelligencer/article/tom-scocca-medical-mystery-essay.html

31 9 3 years ago

Terr_• 3 years ago

I despise those stories where a writer tells you all about some mystery for thousands of words and then fails to deliver the solution. Usually with some metaphysical vamping about the unknowability of all things. What are you even telling anyone about it for? But I didn’t have an answer, and I still don’t.

lijok• 3 years ago

I feel for the author. A sudden onset, undiagnosable illness like this is one of the most frightening things one can experience.

One day in February of last year, our perfectly healthy dog just wouldn’t stand up. Blood tests showed abnormally low platelet count. Multiple blood tests, steroid injections, ultrasounds and a bone marrow biopsy later, by process of elimination (no internal bleeds, no tumours), a panel of vets could only speculate, but not diagnose, Immune Mediated Thrombocytopenia. Out of nowhere, his immune system was now attacking his platelets. Luckily, whether it was IMTP or not, we had a simple mediation plan - high dose of steroids. It worked, he became a happy dog again, but the side effects from steroids were brutal; hair loss, diarrhoea and constipation in a never ending cycle, night tremors, sores all over his legs. We would periodically reduce the steroids, but immediately the platelet counts would start dropping, so we would have to increase it back up. Then, roughly 9 months later in October, just like it started, it ended. Out of nowhere, his platelet counts normalized and the illness disappeared.

We still don’t know if it was actually IMTP, or some other immune-mediated illness.

It’s an absolutely terrifying experience to go through. The unknown eats away at you.

Havoc• 3 years ago

We’re so used to doctors figuring it out in half an hour throwing some antibiotics or painkillers your way and calling it a day.

The first time you see them clueless is jarring. Autoimmune issues in particular.

I experienced vaguely similar to OP except 1/100th the scale in seriousness so similar only directionally.

Got my diagnosis - and upon googling it discovered it amounts to “unspecified autoimmune joint thing”. A placeholder for all intents. Cure none, clear course of action none, cause unclear. Options available all dangerous in themselves.

In my case tolerable but still was eye opening. Doctors bluntly proposing yolo’ing treatments because they have no idea etc.

Just thankful in my case life impact is super mild.

mensetmanusman• 3 years ago

We are all temporarily abled.

junar• 3 years ago

I don't understand why the author dismissed hydroxychloroquine as a "malaria drug".

Of course he doesn't have malaria. It's pretty likely that the rheumatologist prescribed it to treat a potential autoimmune disorder [1], which is information that can be found in the Google searches that the author mentions performing at various intervals.

[1] https://rheumatology.org/patients/hydroxychloroquine-plaquen...

StreetChief• 3 years ago

Wow...

S_Bear• 3 years ago

I have a genetic condition that I had 'under control' until I got COVID. Went from being OK to being crippled over the course of 2 years. Doesn't impact my job too much since I'm at a computer most days, but I find myself only able to push about 80% of my old performance most days, but it exhausts me.

I fall down often if I'm not using my cane or have my leg braces on, and my hands randomly drop things. I had to give up guitar because the weight of it pulls my shoulder out and my fingers can't handle playing chords anymore.

I can't explain the frustration with my body, especially since the decline was so fast. My wife is supportive and doesn't ask too much from me when I'm having bad days. But it just sucks. It really sucks.

faeriechangling• 3 years ago

I had neither and now I have both and one of the sparse blessings is that I don’t take either for granted.

mesofile• 3 years ago

Very good read, though I also wonder about the author’s out-of-hand dismissal of prescribed hydroxchloroquine. Readers may be interested in a bit of follow-up from the author's newsletter:

Speaking of getting better: the essay leaves off with the narrator freshly out of the hospital and in extremely shaky physical condition. Readers who are wondering what happened next can be reassured (or not reassured, if they were rooting against the narrator) that the medications have, so far, basically done what they're supposed to do, even if the name of the condition they're treating is still subject to debate. The runaway muscle inflammation has been reined in; I'm able to get out and walk around and do things, as long as I don't try to do too many of them all in a single day. I can pick things up off the floor and raise the window sashes and get on a stepladder to reach up and fiddle with the balky light fixtures, all of which were impossible less than three months ago.

https://indignity.substack.com/p/healthy-start

My Unraveling I had my health. I had a job. And then, abruptly, I didn't

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