Has anyone had a doctor treat their Auitommune Disease like a mental disorder?

[OneLove2019]

I went to go get a scheduled mammogram and learned that my old doctor had retired (he was well into his 80s). Under Dr. Isreal, I always felt as if I was treated with kindness, but he did not know about my sarcoidosis vasculitis, so I informed the Doctor who was working his stead about this and how I was on MTX and prednisone. I explained I had sarcoid nodes in my heart and lungs and recurring iritis and asked if was possible that some of the "growths" they had biopsied and found not to be cancerous in the past were related to my current issues.

They practically rolled their eyes and the doctor's present assistant even said "Finding nodes in the body is natural," as if I was being a historic ninny. I mean, I was deathly sick and in and out of urgent care for 4 months prior to this diganosis. As I tried to explain, I was cut off a couple of times and even saw them cut their eyes at me like I was either making it up or a head case. By the end of it, the new doctor asked for my rheumatologist's name. Has anyone else experiences these kinds of things? I am beside myself furious.

On a side note, I had no one issue of inflammation or cysts in my breast tissue--not one. I have had fibrocystic lumps my entire life, but since being on medicine a few months, I seem to be all clear. Good news on that front I suppose.

[eekt]

Unfortunately it's very common for folks to be misdiagnosed with mental illness or 'medically unexplained symptoms' along the way to diagnosis...to be treated the way you were AFTER a firm diagnosis is diabolical and maybe the best way to move on is to change doctor

Great news you're all clear of breast lumps xxx

[OneLove2019 in reply to eekt]

Thank you! Yeah, I told my hubby and he said we should probably go elsewhere next time. Dr. Israel will be sorely missed.

[Hidden]

Yes I’ve had this happen too. For me it was due to relocating after a terrible year of pneumonia, pancreatitis and sepsis. Each new GP and specialist I saw seemed to assume that I was being hysterical. I’ve since learned that this was due to one neurologist writing that I’d had a functional stroke-like event and that possibly other symptoms were functional at the end of this lousy year. Which wouldn’t have been surprising frankly. But actually the so-called functional event was caused by Tramadol so it transpired!

What I have noticed - and perhaps this applies to your dreadful encounter too - is that some doctors become very suspicious when we know a lot about our conditions and use fairly medical jargon. This seems to lead some of them to assume we must be suffering from “heightened health awareness” all of itself.

So slowly I’ve had to dispense with terms that doctors and the internet have taught me such as parasthesia, disequilibrium, dysguesia and sicca and opt for less medical ways to describe these such as pins & needles, dizziness and dryness and bad taste. And I’ve learned to give the impression that I haven’t a clue. What a waste of precious time though?

It’s like we have to spend more time pandering to their fragile egos so that they can work it out and explain everything back to us in “layman’s terms” rather than more helpfully just getting straight to the point about our histories - saving NHS/ them and ourselves the expense and bother of starting all over again with them reworking our historic crap?!

The expert patient can be a bit annoying I can see - but we become experts on our own bodies by hard experience so our knowledge about our rare conditions can also help them no end. They need to get over themselves honestly!!

So sorry for your ordeal. Would you consider complaining perhaps as this might help you in future and others too?

[OneLove2019 in reply to Hidden]

I toyed with doing that as I can only imagine what some of Dr. Isreal's other original patients may be going through. I am sure a lot of it has to do with them feeling as if we will compare them to our old doctor. Being snots will only make our opinions worse, not better, however. Hubby thinks we should go to another office as well...

[OneLove2019 in reply to Hidden]

Oh and thank you for your response, I really think some in the medical profession need to be retrained on how to deal with patients who may be trying to learn ways to deal with a chronic illness.

[miccika1]

Please change the doctor. This one sounds horrible and yes i had more than one like this and changed them not soon enough

[OneLove2019 in reply to miccika1]

It's so crazy--I agree, they just don't get it or they hate to deal with someone who has a working knowledge of their own condition. Like they expect us to just let the medical profession force feed us information about our own bodies.

[miccika1]

A lot of docs are simply arrogant. Keep advocating for yourself and find a good one. There are plenty good ones out there