Insurance deemed the next step of diagnosis unnecessary

This post, like others that will follow it, is a continuation of my Gambling On Life series.

Hi. My name is Will, and I have Charcot-Marie-Tooth disease.

I know this because - after literal months of eliminating various potential causes and being stabbed and shocked diagnostically - my doctor suspected the root cause of my problems was a genetic disorder, so we ordered a genetic test..

..And after about 7 months of back and forth, insurance has said "fuck that, we're not counting it as covered. it's not necessary."

This kind of testing was literally the very next step in diagnosis after my EMG/NCS showed indications of nerve problems.. And it was a definitive result with no ambiguity.

Literally the only other option is a goddamned nerve biopsy, but that's rarely done as genetic testing is typically enough except when the type of CMT is vague (hint: Mine wasn't, and is actually exceptionally fucking rare: CMT4F).

I may be lucky, however: It appears that - thanks to hitting my max OOP last year with the Enbrel - that I may not actually have to pay for this testing regardless..

..Which is a very good thing, because this test is $4,000.

Four. Thousand. US. Fucking. Dollar. Bills.

Here's the fun part: I actually probably have even more wrong with me, but I'm honestly considering saying "fuck it, I don't need any further diagnosis, I'll just deal with it".

CMT only covers some of my nerve pain: Not all... And the next most likely step would be a spinal tap.

BCBS IL - my insurance provider - sent me a massive series of printed documents with all the letters covering the back and forth between the doc, the lab company, and them.. And a list of approved procedures for a variety of conditions, including neurological.

What is insane is that they even say that genetic testing for my condition is fucking covered, but apparently not in this very specific limited case.

I can only imagine they'd deny a spinal tap, too, so.. Yeah, we're not going to fuck around and find out.

Instead, we're going to switch to the "Yeah, but did you die?" method of prioritizing my healthcare.

Medication? That's fine. Even my expensive-ass RA meds are still pursuable (we're going to try another biologic next month, which will actually work out since I'll switch to a new payment card to cover it this year), and we can obviously throw on some nerve pain medication to help me stick my head in the sand about all these different nerve pain problems.

I just have to sit here and wait to see if I get a goddamned $4,000 bill for the testing required to diagnose a chronic, life-long disease that has no cure nor treatment.. All I can do is take meds and make lifestyle changes to slow the progression of it.

Things that I would only know to do with this fucking diagnosis, which will also reduce the potential costs to insurance down the road for a variety of expenses.

Fuck the US healthcare system.

I wonder just how many folks in the jury for Luigi's trial will be people like me who have been fucked hard by insurance companies.

Jury selection is going to be a challenge.