Misdiagnosis or Medical Condescension: Has it Happened to You?

Miscellaneous and Personal Stuff I Must Share
21

I just read that article and I feel like I’m seeing my whole life in a new light.

My medical stories are not serious. I thought that the majority of it had been because I was and am obese and that everyone had the same problems with their doctors not listening to them as I did. I have finally found a doctor who actually listens to me and seems to genuinely care.

It wasn’t always that way.

I posted in the other thread about the worst pain ever felt about dentists drilling my teeth, delays in getting antibiotics for root canaled teeth and a doctor completely dismissing my pain from a pulled muscle in my chest because I didn’t see the doctor I saw before. Other interesting slip ups have been:

  1. My pediatrician never told my mother or me about my heart murmur until I was having a sports physical at age 11. The only reason we found out was because the physical was done by his med student. They paraded every student in to listen to my heart, all while telling us nothing. The doctor was like “Oh, yeah, that’s normal for her, no big.” Later, I found out that I should have had an echocardiogram because you can’t actually tell a serious heart murmur from a non-serious one just by sound. Good news for me though is that I just have an unusually echo-y chest.

  2. When I was 13, my parents too me to the same doctor after I started having extreme stomach upset after almost every meal. In fact, I lost about 30 pounds in a summer from all the vomiting and diarrhea. My parents thought I was being silly. So did the doctor. He prescribed vitamin B12 and counseling for my obvious mental problems. Turns out I have IBS and I have trigger food that cause extreme stomach upset. Like broccoli, raw carrots, and dairy.

  3. My mom took me to a dermatologist to help with my acne. She gave me an antibiotic that made me vomit every single morning I took it. My skin cleared up, but I threw up pretty much every morning at school. When I graduated, I stopped taking it. It wasn’t until I was in college and the dentist who diagnosed my failed root canal about prescribed me the same antibiotic told me I was allergic to it when I described what happened every time I took it. Yeah, that kinda makes sense.

  4. This one is my favorite one to be angry about. I was obese and married and I wanted to be able to have children. Unfortunately, I found that my periods had gone from mostly regular to very irregular and terrible when they did come over the course of about 3 years. I went to a doctor who immediately noted I was obese and said that my amenorrhea was clearly due to that. She told me that they would draw blood to check my levels, to try to lose weight, and that she’d see me again in a month.

I go back in a month, she sees that my A1C is good but my thyroid is not working. She tells me to take Adipex and to come back in in another month where they’ll take more blood work. I took the adipex and I didn’t lose very much weight. Instead I felt horrible and jittery and miserable. I was also thinking about what she had said about my thyroid. I went back in and she didn’t like my progress. She said that she would “challenge my metabolism” by adding synthroid. She added synthroid, I lost 25 pounds and had one period. I saw her 4 times before I had had enough. When I found I was pregnant (after that one period) I didn’t go back to see her. Oh, she also offered to give me a shot so that I would bleed. You know, because that’s clearly what I wanted, right?

I pulled my health record from her office about a year ago when I switched insurance providers. I found out that she had diagnosed me with PCOS and was damn sure I had diabetes too. I have neither of those things. What I do have is Hashimoto’s Thyroiditis. It had be diagnosed by another doctor while I was pregnant. She might have found it if she hadn’t been so obsessed with my weight.

22

I’ve got a few. I was either born with juvenile rheumatoid arthritis or developed it when I was only a few months old (depending on which doctor you ask, some have told me it’s not possible to be born with it). I started showing symptoms at 6 months of age, which started a (not) fun circus of doctor visits and diagnostics. This was in the mid 1960’s, before MRI or CT machines and before juvenile rheumatoid arthritis was even known to the medical community. I had exploratory surgery on my knee at 6 months old to try to figure out what was going on. For years I was prescribed increasingly large doses of baby aspirin, until I started hallucinating and my mom stopped giving them to me. We’d never heard of Reye’s Syndrome (and fortunately, I never got it, but it’s amazing that I didn’t).

So, fast forward to my late 40’s, around 2010, and a reumatologist finally actually tells me that I’m a “textbook case” of juvenile rheumatoid arthritis. It took that long for the medical community to catch up to me.

Other things:

I went to a female GP one time who told me to start getting mammograms (at age 28 with no risk factors). I told her that I had concerns because I’d heard so many bad things about how they hurt, etc. Instead of addressing my concerns like an adult, she ranted about how people say stuff like that because - and I quote - “they want to piss me off”.

I went to a male GP once for a minor concern and after attending to whatever it was, he asked me when my next pap was due. I told him in a few months and didn’t think anything more about it. A month later, I went to him for a followup and he again asked about the pap. Okay, so he’s super interested in pap smears, but whatever. When it was due, I scheduled an appointment with him. After doing the pap, he insisted on also vaccinating me despite the fact that I was not due for any vaccinations (I was up to date, but since I didn’t know it would be part of the exam I didn’t bring my documentation of such). Then he insisted on checking me for glaucoma with a hand-held instrument. It wasn’t the thing that blows a puff of air, it had to actually touch your eyeball. I have a weird phobia about poking things in my eyes, mascara is tricky and I could never do contact lenses, let alone allow anybody else to touch my eyeballs. I tried very hard to hold still and keep my eye open but I kept flinching and started crying. He got frustrated with me and just tried even harder until he got pissed off. I never went back to that jerk. When I walked out of that office I actually felt like I’d been molested.

23

A couple…

My favorite was I was in labor with my water broke and a 36 week (IIRC) pregnancy - and the nurse spent four hours confirming I was really in labor. During that time, she refused to check my cervix, refused to call my doctor, refused to do anything other than wait for the contraction to end and say “it would be easier if you’d breathe.” She also didn’t start the antibiotic drip (I’m a Strep B carrier) or take my blood pressure (I had eclampsia) because “we are going to stop this anyway, you are too early.” When the shifts changed the next nurse came in and checked my cervix, said “you are ready to go” I told her I’d been asking for my epidural for four hours and she was “well…we can maybe fit it in,” and grabbed an anesthesia team as they were leaving the next room (and lied - slightly - about my dilation). She also freaked out about the lack of antibiotics.

My OB showed up 30 minutes later, visibly pissed (I think the nurse told him what happened) and at my followup - that nurse doesn’t work in OB any longer.

I also have tension headaches that will lay me flat for a day. You know, migraine medication doesn’t do anything for tension headaches, regardless of how many times you prescribe it.

24

My sister’s aging oncologist misdiagnosed her cell count levels (she had CLL for many years) after one test, wrongly put her on chemo, then wrongly took her off her anti-viral meds, which led almost immediately to a horrible case of shingles and her eventual decline into worse and worse health, finally killing her from infection.

How do I know the doctor was wrong? Because by chance the fucking murdering bitch was on vacation when my sister suddenly collapsed and was seen by someone filling in, who actually let slip that the test numbers in no way justified chemo and it should never have been started. The fucking cunt retired almost immediately afterward. Why my sister’s spouse didn’t sue the doctor and the hospital for malpractice remains a mystery to me.

25

I’ve had medical condescension. I remember one time I went into a doctors office, and as he gave me his diagnosis I said it at the same time. He looked at me weird and said how did I know that. Like I had no right to learn about my own health.

It took literally 10 seconds of googling my symptoms to get the same diagnosis a doctor who charged me $300 gave me. Bleh.

I’ve had doctors ignore serious issues to focus on issues which (according to the science) were pretty minor at my age. That bothered me a lot.

26

I have chronic migraines (every day). I find that I have to be extremely emphatic and descriptive about my symptoms and pain or I get completely ignored, even by my neurologist who has seen me for years. I can’t say, “my pain level is about 8 and rising.” I have to say, “I feel like I have had a railroad spike driven through my head.”

I had a similar experience with my back. I had a surgery where a surgeon removed part of a bulging disk in my back that was impinging on nerves, causing leg weakness and other issues. At every follow up, the doctor would ask me about my pain level. I always told him it was holding around 7, consistently. One year later he finally ordered an MRI. Turns out the surgeon had separated the bulging disk, but left the piece in my back. It was rubbing up and down on the nerves and causing all kinds of damage. I had to have a second surgery to remove it and I have permanent nerve damage.

The lesson I learned is to bitch loudly and explicitly, or nothing happens.

27

Not me but my oldest kid.

When she was about 18 months old, she’d been sick for a few days: fever, lethargic and obviously not well. Took her to a local doc who said she just had a garden variety virus and would come good soon.

Two days later, still not well, back to doc who reconfirmed his earlier diagnosis…

Another couple of days and by now I’m really worried so took her to A & E at our local hospital. Doc diagnoses a urinary tract infection (without even bothering to get a urine sample??) Antibiotics prescribed…

So the kidlet is still sick, and my crazy sister recommended a homeopath. Visited this wonderful lady who took one look at my daughter, listened to her breathing for a few minutes, and (accurately) diagnosed her with pneumonia. She organised an urgent appointment with a paediatrician she knew, and that night the kid was in hospital.

Fast forward 13 years or so, same kid was involved in a car accident that resulted in (amongst other things) a broken pelvis that required an external fixateur to stablize the fractures. After hospital and in-patient rehab for a couple of months she finally got to come home!

She’d been home nearly a week when she started complaining about pain in her hip area. Took her back to the hospital, and the Charge Nurse from the ward my daughter had been a patient, took me aside and essentially said she was malingering and imagining the pain! The nurse tried to couch it in benign language, that my daughter was reacting to being home and not being the centre of attention that she had been in hospital and rehab, and to take her home and all would be well in a few weeks!

Another few days, and my daughter is in much pain, febrile and essentially unable to walk…so back to A & E and I demanded a thorough examination. An ultrasound was duly ordered, and as the radiographer pressed the thingy against the scar where the fixateur had previously been , a veritable geyser of pus erupted and continued to ooze. Four more surgeries in the next five days to clean the hip-joint thereby prevented the loss of her hip to fully-blown sepsis.

:dubious::dubious:

28

Medical condescension? Try being a childless, unmarried woman under 30 asking about getting her tubes tied after already having a termination and being told by her orthopedist that pregnancy would cause her moderately severe scoliosis to worsen from needing bracing to surgery. Every OB/GYN would happily admit ignorance of ortho issues as though that made the problem go away.
“No, you’ll change your mind.”
“Even if I did I can’t change my spine!”

The best comment of the bunch - “Who will want to marry you if you’re sterilized?”
They wouldn’t even give me a pamphlet on it.

29

Misdiagnosis? You mean like when I crawled to the ER with a ruptured appendix, and they said I was just constipated, and sent me home, telling me to come back tomorrow if it still hurts?

Of how about last year, when I had excruciating pain in my hip and back, and went to a Pain Management Specialist … who interviewed me and examined me, and I never heard from her again. No diagnosis, no treatment, no replies to my phone calls. One of her colleagues said she was “very busy.”

30

I had a dermatologist tell me that my fingernails were all pitted and brittle because of damage due to nail polish, and she didn’t give me a chance to give her the full history which made her diagnosis questionable. How do I know she was wrong? I haven’t used nail polish in over a year, my nails have long since grown out, and they’re still pitted and brittle. That doctor was also rude, condescending, and tried to convince me to accept an expensive medication not covered by my insurance without trying any other alternatives. At one point, she told me, “My assistant found this medication in the closet, you can try it and see if it helps.” She and the assistant also gave me conflicting instructions as to how to use said closet-medication.

Lucky for me, that appointment didn’t have any negative consequences other than making me really pissed off for a couple days.

31

Years ago I moved from where I had been a long time resident and first time I fell ill I went to see a local doctor. It was obvious to me that I had Bell’s Palsy. A friend had had it in high school and we had mocked him mercilessly and since then I had been a registered nurse although I didn’t work as one any more.

The doctor asked what was wrong and I said, “I appear to have developed Bell’s Palsy.”

He instantly got the shits and informed me that he would be the judge of that. I had Bell’s Palsy and I acquired another doctor.

32

Both misdiagnosis and condescension.

When I developed diabetes I was told it was Type 2, despite not significantly overweight nor sedentary. I was, however, 38 years old, so the local docs just assumed it was Type 2 because nobody that old develops Type 1 (wrong).

After the recommendation of “exercise more” despite already exercising MUCH more than the guidelines they gave me, “change your diet” though I was already eating healthier than the guidelines and daily Metformin (an oral diabetes drug) did nothing at all for my blood sugar, I went to a local endocrinologist. By then, I’d already pretty much figured out I had Type 1, not Type 2. He just brushed that aside, no way did I have Type 1, despite all my evidence to the contrary.

He wanted to put me on all sorts of newish drugs (Byetta, which had only been out a little while at the time, etc). When I asked questions about why he was recommended drug X over drug Y, or why I wouldn’t just go on insulin, he got pissy with me. He ended up saying “Fine, I’ll give you a prescription for whatever you want.” er, no, I didn’t want that, I just wanted to understand why he wanted me on the drugs he wanted me on.

I ended up going on Lantus, a long-acting insulin. He told me to start with 50 units a day (normal for Type 2s, but Type 1s need MUCH less). I was like “um, that seems like a LOT.” Once again, he got pissy with me. “Fine, start with 10 units and keep increasing until your sugars get in control.”

Now I know, had I taken 50 units of Lantus, I’d’ve been in the ER. My basal insulin now is around 15 units a day - 50 units would have been dangerous.

I eventually went out of town to some specialists and got a real diagnosis, and also found out my situation is far from rare. But still, no fun!

33

God, you remind me of a similar experience I had. This was the same female doctor who felt that mammogram-detractors were just out to get her. At my first visit to her, I was healthy and only wanted a referral to a reumatologist for maintenance of my arthritis. Remember, I’ve had it since infancy and by this time in my mid-thirties it was well-documented by many doctors. When she asked what brought me into her office today I honestly said that I’d like a referral to a reumatologist to manage my arthritis. She said “I’ll be the judge of whether you need one.”

I also have a horrible nurse story. When I was six, I got my left ankle fused. That’s a story all by itself, but for now all you need to know is that it was braced together with two large metal pins, one that ran horizontally through the ankle bones, and another that ran horizontally through the tibia about mid-calf height. and those were held together with metal brackets on either side of my leg, on the outside. And also a cast. When the time came to remove all that crap, a small team of nurses removed the cast and prepared a basin of warm soapy water to wash my leg with. Then they removed the pins, and oh gosh darn but it’s lunchtime! They started arguing about who could go to lunch and who had to stay and wash the patient’s leg (with open holes where the pins went through, remember). After a few minutes of arguing, my mom told them to all go and she would clean my leg. They did! (And she did. One of many times my mom earned her wings in heaven.)

34

For reference, I grew up in a ‘medical’ family: Two doctors, a nurse, a prosthetist-orthotist, several hypochondriacs and many editions of the Merck Manual.

1 ) My mother, who worked at the local ‘doc in the box’, brought me in when my supposed cold didn’t clear up. Doctor shrugs, says I probably got it again. Nothing for it. A week later, I am sick to the point of not being able to walk. She takes me back to see a different doctor who diagnoses me with a serious case of pneumonia and I am finally cured.

This gets back to first doctor, who accuses her in front of the whole staff of ‘doctor shopping’ until she got the answer she wanted. She worked there another twenty years and he never dropped it.

2 ) My first pelvic exam. Large family gynaecologist sticks large finger ‘up there’ to confirm I have a septum. I do and that finger hurts. I tell him it does and he replies that it does not.

My mother and grandmother continue to see him. I do not, as I informed my mother he would get a kick in the face the next time.

3 ) Another gynaecologist asks me if I was raised religious when I inform her I am not having sex at all, let alone with a regular partner, because of said septum. When I say that I was raised in a religion, she then explains to me how to have sex. With diagrams. That she draws. And labels. And tells me I should sit with a mirror and learns about all my holes.

I assure her that I, too, have had a copy of ‘Our Bodies, Ourselves’ and am just there to get the septum snipped.

4 ) I suffer from depression. A lot of people in my family do. I made an appointment in the early spring to see the shrink at the student GP practice. For Late August. My father dies in July.

When I return to campus and attend my appointment, I am informed I am only depressed because my father has died and I’ll eventually get over that.

5 ) I also have eczema, which ties into the above, being stress-exacerbated. I went in with my first big outbreak, where the doctor said I must be living in filthy conditions and needed to bathe more often- because I surely had scabies. My old flatmate had scabies, as she had worked closely with at-risk and vulnerable people. This looked nothing like it. Doc says that he’s the doctor, this isn’t America where you can ask for just any drug and get it, and it’s scabies. Come back in a week if it isn’t gone.

The next week, he happily tells me I’ve got eczema.

Five different doctors, two different countries.

Bonus story- I have vitiligo. Absolutely any doctor who has any reason to look at anything other than my face feels the need to ask me if I know I have it.

35

This reminds me of our prior plant nurse. Every year during our required annual physical, she would ask me “Do you realize you are color blind?” - while reading my chart that clearly says COLOR BLIND on it, over and over for nine years.

The last year she was here, I pointed out she’d just written it down again for the tenth time, and might want to get her eyes checked.

36

I remembered another one…it happened to my father.

He went to see the doctor for something. They took him back to a room.

He waited.

And waited.

And waited.

Finally he leaves the room only to find THEY HAD LEFT FOR THE DAY.

37

I knew I had a Pit thread on that. I misremembered part of it.

38

Well, there was the time that my doctor prescribed Bactrim while failing to read the big note on my file that said I had a sulfa allergy. The first reaction was when I was 2, so I didn’t remember it, and somehow it had never come up in the ensuing 20 years. Fortunately, I merely developed hives on every skin surface, vomiting, and heart palpitations, rather than going into anaphylactic shock or getting Stevens-Johnson syndrome. But it was pretty darned miserable.

I went back and saw another doctor, who took one look at the front cover of my file and said, “Oh, this says you’re allergic, you should never have been given that.” OK, then! I did ask my parents, who were normally very on top of things like that, and they had no knowledge of it either so clearly something written on my file got lost in the patient communication for two decades. That was the last time I took an antibiotic without double-checking for myself exactly what was in it.

39

HAHAHAHA. When I was at NU (when dinosaurs roamed the earth) my friends all had standing orders for each other: if I have a heart attack on the steps of St. Francis, call an ambulance and take me to Evanston.

My story: adult workplace chickenpox. Every single person in the office who had not had chickenpox as a child, came down with it. So did I, but a rather mild case. My doc was a bit arrogant and dismissed my mild rash as eczema. I had to ask him to take a closer look with a bright light. He got real quiet, then shamefaced. It was chickenpox.

At least he admitted he’d been wrong!

ETA: my mother had somewhat major surgery and when she had JUST been wheeled out of post-OR recovery into her room, a nurse came in and asked her if she was allergic to Demerol. My mother said: Ungnghshfnngnh. The nurse, without so much as glancing at the chart, proceeded to inject her. I pretty much flipped out – another story for another time.

40

I don’t know if I’d go so far as to call it condescension, but my daughter came down with whooping cough about a year or so ago. I had my suspicions (I had never heard whooping cough before, but when I heard my daughter’s cough, it’s exactly what I would have called a “whoop,” plus looking up the symptoms, they completely aligned), but the nurse practitioner who saw us just diagnosed her with an ear infection. A few days later, my spidey sense was tingling and I called her after hours (which I am not wont to do) and was sent to the children’s ER. I can’t say for certain, but to me it sounded like she was sending me more to calm my fears rather than thinking there may actually be a possibility of pertussis. After a few hours in the ER, we had some chest X-rays done, and a swab, and the ER doctor interviewed us, surprised that our doctor (who is connected with the hospital) would have sent us there, as he had only seen one case of pertussis in his life and that it was highly unlikely it was pertussis (also, she had been vaccinated). I explained that it wasn’t the head pediatrician who sent us, but the nurse practitioner, and it wasn’t her diagnosis, it was more to allay my fears. I felt a little silly about the whole ordeal, and we were sent on our way home and told the lab results would come in the next few days, but not to expect anything.

The following evening, we got a call. Positive for pertussis. I wasn’t crazy after all!