Imagine if you were a young woman, and you had been treated for 12 years

[pnwmom]

for anxiety, depression, pseudo-seizures, fainting spells, migraines, digestive problems, PTSD, borderline personality, and you were given one drug after another and put in long term treatment programs, but nothing ever worked . . .

And it all turned out to be a serious physical (not psychological) disorder, that was finally diagnosed by a specialist you turned to because your friend said it sounded like what her sister had finally been diagnosed with -- and, coincidentally, your aunt had done some googling and suggested the same possible disorder.

Unfortunately, it has no cure but there are some treatments that seem to be helping my young relative . . . fingers crossed.

[Sanity Claws]

1. That's a long time to wait for a correct diagnosis

Did the delay in diagnosis affect her prognosis?

Can you share the name of the condition? I am just curious.

[pnwmom]

3. No, I don't think it affected the prognosis, which is individual and unpredictable.

It's a disorder of the Autonomic nervous system, called P.O.T.S. All the body systems that are supposed to regulate themselves don't do a great job in her case. There were some simple physical tests that diagnose this (one involving a tilt table) but no doctor over all those years thought to administer them.

[Squinch]

2. Oh, lord! What's the diagnosis? That's awful.

[pnwmom]

4. A disorder of the autonomic nervous system called P.O.T.S.

[Squinch]

5. Wow. That looks like it would be a bear to live with.

[Ohiogal]

6. How dreadful

and appalling that so many doctors do not take women's complaints seriously.

[pnwmom]

7. Yeah, I wonder if that was part of the problem. And with a teenage girl

it's probably even worse.

[Lochloosa]

8. I lived with undiagnosed sleep apnea for 9 years.

It's such a relief to finally know what is wrong.

[pnwmom]

10. Glad you figured that out!

I know two people who only learned after they had complications; one had a grand mal seizure from low oxygen levels, and the other had permanent eye damage.

[Lochloosa]

13. It will kill you.

[smirkymonkey]

9. Seems like too many doctors think it's all in a woman's head when it comes to female

disorders. Part of the reason I only go to female doctors (w/ the exception of an orthopedic trauma surgeon for a broken arm - who by the way told me I would only get 70% mobility back at best and I got 100% mobility back, thank you, doctor).

[TexasBushwhacker]

15. Yup. I was having all the symptoms of low thyroid but had to go to 3 doctors to get one to test me

The others thought I was just trying to get thyroid supplements to lose weight. Turns out I have autoimmune hypothyroidism (Hashimoto's disease).

[pnwmom]

22. Good for you for persisting!

[smirkymonkey]

24. Same with me. I was hypothyroid and it took forever to get an accurate diagnosis.

I am on both T3 and T4, but I actually one Dr. in NYC tell me that I didn't need them and wouldn't prescribe them so she took me off. I was so dead tired all the time and freezing cold without them so I found another doctor who would take me seriously.

[mopinko]

11. sounds like my youngest.

finally figured out at 21 that she had epilepsy from a head injury at 5. nobody guessed until the seizures advanced to grand mal.
even the pediatric neurologist she saw for headaches didnt figure it out.
she has autonomic issues, too.

docs are so quick to settle on the crazy. in this case it was a crazy mom, then a crazy young lady.

[pnwmom]

12. Aww . . . .

I'm so glad you figured out what was happening with her. I hope she's found some medications that are helping.

[mopinko]

20. she's getting there.

it has been a harrowing experience, and, w that timing, has impacted who she is.
but she is reclaiming that, and integrating things slowly.

she still has strange things that happen, but she has found some compassionate docs that take pretty good care of her.

her life is a battle, but i raised a warrior.

[elleng]

17. Reminded me of her.

[mopinko]

21. .

[Coventina]

14. The medical community has a long history of treating women as hysterical

rather than having a real physical problem.

It's beyond frustrating.

[lunatica]

16. As long as the treatments are the correct ones!

I hope she recovers from the terrible treatments!

[pnwmom]

18. The treatment for what she actually has isn't terrible, at least, since her insurance covers it.

It's a medicine to regulate her heart.

[lunatica]

19. Whoever that doctor is definitely keep him or her!

She shouldn’t have to fight every doctor she sees. Hopefully there’s some way she can keep her medical records in case she needs them, like if she ends up in a hospital with unknown doctors.

[pnwmom]

23. The irony is

her dad's a doctor. But they're in a rural town, and he started to believe all the (wrong) specialists who couldn't diagnose her so they thought it was mental.

The mom was the one who kept pushing, and pushing, and pushing. She finally brought a bunch of articles to a cardiac doctor in town. Probably because she was married to a doctor, he took her seriously enough that he at least read them. And the next time he saw them he admitted, though he had never seen a case himself, that he thought they were right -- and referred them to an autonomic disease specialist in a large city who diagnosed her very quickly. But it had taken her 12 years to get to that point.