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This post is not medical advice.
As I have been saying for years , I have psoriatic arthritis. Once again I have a 100% accuracy in self diagnosis. I shouldn't have to do all the research and get to a diagnosis years before doctors do. But this has always been my life. I am a woman so I am dismissed by default. I have a literal textbook case. Not an outlier or odd presentation.
The problem? Well one of the problems is a I have a classic presentation of the disease that is older than I am . This presentation was officially added in ...1973. Groundbreaking cutting edge science. The issue : I have the classic FEMALE presentation. This makes sense considering I am in fact female though males can also have this presentation. However, doctors still only "see" the male presentation, despite slightly more women having the disease than men.Male presentations are still considered the "default" of ALL diseases. This bias kills and harms hundreds of thousands of women every year.
I had a telehealth consult and the dr wasn't terrible. Like a 4 out of 10. he didn't directly gaslight me to my face like most doctors but he did not only minimize my symptoms but minimized the reason I needed surgery almost two years ago.
He also spend a lot of time talking about my hands. My hands are the ONLY part of my body that does NOT hurt. I have some minor issues in my fingers like my nails growing in warped and I have Reyanuad's in my hands an feet. Other than that my hands are fine. No pain or stiffness in my hands outside of Reynaud's flares which I get in my feet as well.
I had to repeat at least 4 times that no, I do not have stiffness and pain in my hands. My pain is my lower back ,SI joints (both of those are mild) and mostly in my ankles which is severe pain and connective tissue and bone damage.
Yet why would he keep circling back to my hands? Want to take a guess? Guess which biological sex tends to have asymmetrical presentation in the hands and wrist? Hint: It's males.
He kept trying to get me to fit in the male presentation box. I have the most classic female presentation of the disease in which it's bilateral and in the ankles. I mean it's like textbook presentation in women (though some women do present like the male dominant presentation. That's valid too) The back and SI part is in general more common in males but happens in females as well.
Ok. So the doctor at least kept accurate notes for my medical records then. right? So I can get a second opinion? Nope. Full of lies like most of my medical records.I don't mean mistakes I mean full on fabrications.
He noted in my file I have morning stiffness and pain ion my hands., after me telling him I have no pain in my hands like 5 times at least. He also described my pain incorrectly.
I am very through and specific. I said I wake up with stiffness all over my body EXCEPT my hands (and abs)and it gets worse as the day goes on. The only exception to this is my lower back pain does get better throughout the day but at night gets worse. I specified all my other pain and stiffness gets worse with motion and as the day progresses. He noted I have morning stiffness in my hands that gets better as the day goes on. This difference is important.
He also lied on all ROS questions which most doctors do to commit insurance fraud. It's funny because I have POTS and he put down I "denies dizziness, syncope, lightheadedness" My guy that is my 24/7 existence. But I digress.
No mention of the diagnosis in this record. So that means I can't just go to another rheum for treatment. I have to start over. I spent hours uploading records and images he never read.
He also dismissed my surgery as"surgery for ankle pain" It was a full ankle reconstruction due to my tendons and ligaments tearing due to my psa. He knew that. I told him. It was in my records. But yeah just "ankle pain".
That is dismissive and dangerous. This is health care for women. We have to fight with everything we have for a chance of getting care. Diagnoses take years longer than men even with female dominant conditions/presentations and once we have diagnosis they are dismissed too.
So yeah. I was right but still have no treatments. I am in severe pain and my ankles are a ticking time bomb because my immune system is attacking them. I am at high risk for complete rupture of the achilies and other tendons BECAUSE THEY ARE ALREADY TORN AND SCARRED. So much inflammation in my connective tissues that my bones are warping and spurring bilaterally(this takes years of severe inflammation). But yeah just "ankle pain".
My sed rate: 70 (has been for years) -more than 3 times the normal range.
HS-CRP 23 (normal is less than 3)
Elevated IL 6, 8, and mmp-9 . MMP9 is showing my body is actively attacking my collagen and destroying my connective tissues. yay!
I was not prescribed any treatment.
I....
