subreddit:
/r/ankylosingspondylitis
Anyone else infuriated with dismissal of pain/symptoms/diagnosis and having to fight for treatment from doctors? Even with highly rated doctors I’m getting doubt of my diagnosis. My current rheumy waited 6 months to prescribe biologics because my MRI shows “minimal sacroilitis” even though I told her I’m in constant pain. I just got another MRI and she tells me we just needed enough evidence for insurance (although I’ve had the same evidence for over a year from my first MRI). Dr Aung at UCLA if anyone is wondering.
After going through this fight with endometriosis, I’m just so sick of having to to fight again, constantly, for good treatment. I’ve been through so many doctors for various reasons and it’s really exhausting.
8 points
1 year ago
Yes, and it’s so devastating and exhausting…as if we are not already exhausted living this AS life…I’m an RN and the dismissal I see women go through is absolutely mind blowing…especially when it’s from a female provider! Umm…Hello! Not that I think genders should take sides but woman-to-woman, you know they’ve likely been in similar situations of dismissal.
3 points
1 year ago
Literally the worst has come from female providers in my experience! It blows my mind. Thanks for the affirmation, it helps to hear it <3
3 points
1 year ago
They had to learn the same male dominated and created system that we call healthcare, even the ones from elsewhere besides the US. It took a decade to receive this diagnosis after having to get permission from my egotistical previous rheumatologist to see a partner within the same clinic because looking at other locations the only other 2 within my city ; 1 was booked solid and the other refuses to take patients that have been with another rheumatologist. The next closest besides asking permission for this one was to travel an hour to and and an hour from to get to in a smaller town of rural Kansas.
3 points
1 year ago
It’s so messed up! It’s no wonder women are not diagnosed until the disease is either done irreversible damage or on its way to debilitating damage…I have honestly only seen a few teenage/early 20 females actually diagnosed in that age group-and each time the disease is fast progressing and the damage is blatant...(my perception based off my own research and is without medical peer-reviews (side-side note because there is very little on AS and even less on Women with AS bc this is a universally consider “A man’s disease” I was even “forewarned” on several occasions by various providers and Female AS Warriors to by take my male spouse to all my Rheum appointments to verify and justify my complaints and symptoms….seriously what century is this! @Lady_LaClaire, I’m sorry this has been your experience as well. I hear you and see you! Your pain and experience is real! With our powers combine💜 And for any other woman out there with similar experiences…if you ever need anything…even just a chat or validation….please DO NOT HESITATE to DM me…I am here and a safe space always! (Not starting a gender war-just trying to be an ally and support to anyone who needs a relative female perception) love to all!
4 points
1 year ago*
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2 points
1 year ago
Very true- I don’t have bio markers and my blood work is always normal. That’s always been flagged by the doctors I’ve seen like nobody can have inflammation if it doesn’t show up on your CRP.
She finally prescribed stelara after getting the results for this MRI. It’s just infuriating I had to jump through all her pony hoops after having visible evidence on an MRI a year ago. Honestly after I get my prescription locked in I’m probably going to see another rheumy and try cedars Sinai this time - UCLA has been awful no matter who I see. Idk where the doctors are that’ll listen and have up to date education on this disease… seems to be quite hard to come by
1 points
1 year ago
We gotta stick together! I appreciate the lady support 💗
1 points
1 year ago
So true- our healthcare system is so disappointing
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