from the medical mysteries column of wapo-

[mopinko]

how to avoid becoming a medical mystery, and all i can say it- boy howdy.

i am a multi-generational medical mystery.
we know i have a bad case of shogren's, as did my da. but i had to fight for that for years because of 1 anomalous test result.
2 of my 3 daughters are also mysteries. there are similarities as well as differences.

tho cancer took my da at 63, this shit put out his very bright light long before that.
i'll be 67 in a few weeks, so i am ahead of the game so far.
but i am truly sick of this half life.

https://www.washingtonpost.com/health/medical-mysteries/second-opinion-avoid-becoming-medical-mystery/2020/12/11/944799a0-204b-11eb-ba21-f2f001f0554b_story.html

[KT2000]

1. yes - some medical mysteries

are really the result of doctors not listening. A friend lived with lots of pain and ill health, something she thought she inherited from her father, until she found the answer - in her 60's. Celiac. She was able to save her nephew right before he was going to have surgery to remove some of his intestines. Fight is the right word when doctors will not listen or are stuck in the past.

Example: My 70 year old doctor was told in medical school it would be rare if they came across cases of diabetes. It is now practically an epidemic.

[PoindexterOglethorpe]

2. Your 70 year old doctor was seriously misinformed.

Diabetes, both type 1 and type 2, have been around and somewhat common for a very long time. Type 2, what used to be called adult-onset, has gotten a whole lot more common, but still. I'm 73 and as far back as I can remember I've known people with diabetes.

[Warpy]

3. Hello, fellow person of mystery.

It's "Sjogren's," in case you want to consult Dr. Google. I spent years getting carted off to ERs, deathly sick, before somebody finally ran the few tests they had back then.

One unofficial name for it is "lupus lite," which means it's not as immediately deadly but has just as many different ways it can show up in different people.

Nasty autoimmune diseases love to masquerade as other stuff, so getting a diagnosis is often a long process.

The only good news is that once they stick a name on it, they can treat it and limit the damage.

[mopinko]

4. i even had the top rheumie in chicago tell me-

lupus, or something very much like it. i know.

but if it isnt actively killing you, they just dont seem to care.

[Warpy]

5. It was actively killing me, they just couldn't figger it out

They did love me at Mass. General, I was interesting.

[mopinko]

6. the lack of curiosity among docs stuns me sometimes.

honestly.
i have many neuro quirks that have not gotten the interest of a few docs.
incurious and arrogant.

[Warpy]

7. Oh, they werre very, very curious.

My presentation was weird. I don't fault them for not considering autoimmune disease, those were just barely being addressed all those years ago and I was too young to fit the profile.

I'd been getting sick since I was 14.