Tired of the gaslighting

You are telling my story. It is demoralizing to sit with a 30 yr old g.p. who has incorrect notes in my chart. I have asked for a referral to a rheumatologist and she refuses. Blames fibro for my fatigue. I had a rheumatologist who had to close my case after not seeing me for four yrs. He did instruct my gp to give me a short course of steroids. So I don't understand why she says I don't need a referral. I am sick of her stupid games, incorrect info in my chart, and tired of her attitude. Really sick of labs ,dr appts.

@susiejd I had a similar experience years ago - at least as far as how it made me feel: a 30-something female PCP I had my first visit with I'd asked if she had reviewed my medical history from the papers/files I'd had sent over - assuming this would be a good practice to be with, I did it before meeting her.

She rather "off-puttingly" scoffed that she 'had no time to review [patients'] past history'. To that I would (still) say: then why should I spend my time going over it with you instead of getting further along with actually addressing treatment? And so on...

I never went back. Definitely not the kind of attitude I'd want in a Primary Care Physician, or any doctor for that matter.

Have since found much much better doctor/s - unfortunately, a few years ago now the best one retired (early, I think it was), being burned out by the huge medical conglomerate he was part of - and it has a stellar reputation - but I think he'd had enough. I hope he's doing much better now, but miss the chats and generosity of his time at some of our visits. It's quite an ordeal, and until recently, I've ('knock on wood') been fortunate to not have life-and-death health issues to deal with (yet)...!

Best wishes ... and I hope you find a more empathetic (or at least helpful!)

These docs are under extreme pressure to increase their case loads beyond reason and safety. I know a few who wish they had chose research or something else altogether.
Having said that, some of them just plain suck I know.
One has to be super aggressive proactive these days in terms of getting good docs and getting good care out of them. That includes your insurance too. It’s a regular part time job for me now but it has absolutely worked even to being the first patient here to get insurance to pay for an ungodly expensive new treatment for my disease. It opened the door for two others now. Of course with the help of good supportive doctors I have found.

It finally happened: a real diagnosis. I think. 😂

I have had symptoms since 2019 and earlier. I found out about my aneurysm in February of 2021. I knew about my 1:1280 titer ANA (Speckled) since October 2021. I got my whole genome tested sometime during this period and finally found a way to sort my variants by severity earlier this year. Behçet's. I have a few pathogenic and many modifier variants across multiple genes for Behçet's.

Doctors did not find this. I've had a cardiologist, a cardiovascular surgeon, 5 rheumatologists, and the same number of PCPs. All of them knew my symptoms, knew my ANA, and knew I had a 5 cm ascending aortic aneurysm and I still had to be the one to figure this out.

I finally got my current rheumatologist to run the HLA-B51 antigen test: Positive. As I knew it would be.

I'm bringing my portable penis (my husband) to my follow up appointment in case my current rheumatologist attempts to continue with the gaslighting of the past several years. Since I have come to realize that I am seen as an unreliable witness to my symptoms and medical history, having a penis-possessing person in the room may help.

And the only reason I'm seen as unreliable is that doctors were/are annoyed that I kept fighting.

And I was right to keep fighting.

You probably are, too. So keep fighting.

Good for you. Not all doctors are incompetent but in the past four years many have lost the ability to search and search and see you as a challenge like Med School.
I’m daily amazed that they don’t read their reviews, listen to complaints and have some concern. I think they simply don’t care like they once did. If you leave the practice someone else is right behind you to fill your shoes so it doesn’t matter.
I verbally tell any doctor if they are lazy, make me feel like because of my age they don’t care and the list goes on.
My PCP sits on a stool and says hello Ms. Spencer, what is it I can do for you. May sound like a nice approach, BUT REALLY! How am I suppose to know. I became tired of it so I went in with
An MRI to see if anything going on in my brain that has concern.
A PET scan to look at the molecular levels to detect anything early.
Endless list of lab work
He looks at me like I’ve lost my mine. He comes back with your Medicare won’t allow this without backup codes. I just say you asked, and I’d like to catch anything and everything early.
He should be listening to me. Then decide what I need. I’m always looking to change but the ones that have those great reviews can’t take on another patient.
Keep pushing and get answers. Don’t settle ever. Some say see a PA they care more. I say all you uncaring doctors are ruining for those great ones. You went to school, you once cared. Read what people say about you and fix yourself. If you can’t change your career. You work for us, we pay your salary. Please, just do what you went to school for.

In my area, many of the hospitals pay the doctors' salaries & not just with hospitals with medical schools. I still use doctors who have their own practices but I understand younger doctors say it costs too much to set up a practice with families & school loans.

Never heard that "bring my penis along" too funny.. haha thank you for advice.

I looked up Behçet's. It's no wonder that no one could diagnose you; it's described as a very rare disease that mainly effects men, of Turkish or "Silk Road" asian ethnicity (Turkistan, etc.), in the 30 to 40 age group. Even if a doctor were very familiar with Behcet's I'm sure that they would immediately dismiss it as a possibility given that you don't appear to meet any of the usual criteria for the disease. I can't imagine that most medical schools even cover the disease; sounds like the only doctor who might have been able to spot it would have to be a specialist in exotic (i.e., foreign) diseases.

It is sad how much of a difference it makes. But it really does help having a man sitting there calmly asking the same < bleep>ing question I did for years! So aggravating.

I only ask my husband to come for non-routine appointments, when I really need something specific to be heard and investigated.

I hear you. It is far less common in those of European descent.

But I had the huge aneurysm. All they have been doing is "watch and wait" to crack me open like a walnut and replace the whole shebang. I had so many other "off" labs, including a wicked high ANA since 2019. I couldn't even get them to run a manual HEp-2 IIFA to more accurately evaluate the pattern. Most ANA tests are going to multi-beaded assays instead of immunofluorescence. Those aren't even ANA tests. They are running all of the common sub antibody tests at once (anti-Ro, anti-Smith, etc.). These tests are far less sensitive. And even when using the HEp-2 IIFA test, the pattern results are usually determined in automated fashion by software.

My pulmonary artery is dilated as well. Should be around 2.7 cm and is 3.4. I have the eye inflammation, the mouth sores, new skin irritations from a millon contact allergies... The list really just went on and on.

Behçet's can be treated. There are case studies of people with pulmonary artery aneurysms that shrunk in size when treated with steroids and cyclophosphamide. That sounds infinitely preferable to trying to recover from open heart surgery. This is a particularly risky one, too.

It seemed obvious to me that an autoinflammatory vasculitis seemed to be in play. It would have been nice if any of the dozen doctors I consulted for my aneurysm acted like they gave a single poo about figuring out why? They weren't going to, though. It had to be me.

Maybe they should admit they don't know what they don't know and call in a higher level diagnostic team? Or run some additional tests. They checked the few items on their algorithm and threw up their hands . "We tried the bare minimum expected of us and we're all done." Fortunately, I wasn't.