I am not using names for legal protection. While I want to scream this doctor’s name from the rooftops and tell everyone in the world to never ever go see this jerk, I know that if he finds it I could get sued for libel. Instead, I am writing this to educate and warn people that doctors like this exist, and as a form of therapy for myself to help me process this awful appointment.
I am also not using names in case this does end up in a legal case. During legal investigations and such, you’re not allowed to talk about the case, so I don’t want to cause any conflicts by having it published. Well, obviously my husband’s name appears in there because he was in the appointment and he is already not anonymous on this blog.
I had been referred to Dr Jerk by my current ENT/allergist. My allergist suspected I have a mast cell problem due to the difficulties I had with my allergy shots. My PCP was happy I was going to see an immunologist because we suspected that my immune system had shut down, but we aren’t sure why or what we can do to fix it (this would be the second time, the first time was in 2012 and had a definite trigger). On top of the difficulties with my allergy shots, I was concerned about the allergic reactions I was having at home, that an urgent care doctor said were anaphylactic reactions when I described one to him (I was there for another problem).
The nurse that did the initial interview with me was very kind and listened well.
When Dr Jerk entered, I remember thinking “he looks like a nice person.” My husband, Dan, was there in the appointment with me.
He asked why I was there, so I summarized in a “bullet point” format: possible mast cell problem, possible anaphylaxis, and an immune system problem that my PCP said warranted a visit with an immunologist. I did, at some point, mention that I had a few other health conditions.
He asked for these “other health conditions” and I started to list the main ones: dysautonomia, fibromyalgia, EoE, g-hsd, etc. I only got to say “dysautonomia” before he interrupted and started to talk over me. He was looking at my medication list (which lists my meds, dose instructions, and why I was given the medication and which condition caused the problem). I said “dysautonomia” and he started talking about how dysautonomia is a junk diagnosis. “Cardiologists love to hang dysautonomia on people.” He wouldn’t even let me explain what had led to that diagnosis, as he would start talking over me after I’d only gotten to say ½ a sentence.
He saw fibromyalgia on my medications list, and then started talking about how all of my conditions were psychosomatic. He even asked me “are you happy?” It was so out of left field that I simply responded “what?!” Again, “are you happy? Like, happy in your life.” Well, reasonably, yes I am.
Then, he went on to say that due to my age, I couldn’t be sick. I needed to “abandon the mindset of being sick” and “be healthy.” I just blinked at him because I couldn’t fully process that this was actually being said to me.
Then, he asked me to sit up on the exam table (I had been in a chair). He took a 2 second look up my nose, but that was the extent of any sort of examination.
He proceeded to go into a rant about how doctors were just trying to make money, didn’t like me being complicated and thought I was faking everything so would prescribe me pills, tell me to get out, and then have me come back for a follow-up so that they could make money. He said he was going to write a book about how doctors are just scamming patients.
He then started ranting about how I was on too many medications and “not a single internal medicine doctor, pharmacist, or anyone else” could say how all of those medications were reacting in my body. “Even 80 year old women aren’t on this many medications!” I just nodded a bit, because I’m well aware my medication list is ridiculously long, but it’s taken years to get my medications to a manageable point with my health.
Then he said he was “appalled [my] internal medicine doctor isn’t doing their job” by taking me off all of my medications. “But of course they wouldn’t, because these were all specialists.”
“I bet you spend 40% of your time in doctors’ offices?” A nod, because he wasn’t wrong. “You’re young, thin, pretty, and fit. You shouldn’t be in doctors’ offices, you two should be going on dates and making babies.” Just stared at him, because did he really just say all of that? “Do you have any kids?” “Not yet.” “Are you trying?” “Yes.” Then he just smiled smugly, and it made me feel as though I’d somehow said something to prove his points about whatever he thought he was trying to prove.
He noticed one of my medications is for eosinophilic esophagitis. “If I took 30 people out of his [motions to Dan] office, and randomly scoped them, I bet half of them would have eosinophils in their esophagus…” I cut him off because I hadn’t even heard of eosinophilic esophagitis until I landed in the ER with an impaction that made it impossible for me to even swallow my own saliva and my usual tricks for resolving these hadn’t worked (I had had a few impactions, no idea why as I thought I was just not chewing properly, but they were usually resolved by a few very hard hits to my back and trying to cough as hard as I could). Thankfully, he didn’t harp on the EoE again, but he looked extremely disappointed that at least one of my conditions was “real.”
Throughout everything, he kept saying “you have to admit these are not organic” and “you know not all of these are organic, right?” I felt like I was being interrogated by a shark lawyer. He would also look at Dan and try to get him to agree in some fashion with him. Like, he’d ask one of his questions, look at me and I’d just stare, then look at Dan. Dan just had a perpetually confused look through the appointment because neither of us could fully process what exactly was happening.
He said he was almost positive that I had MCAS. However, he said that for him to treat me, we would have to do “some heavy lifting” at home. He then clarified that the heavy lifting was me coming off of every single one of my medications. I had to come off “one a week” after calling the doctor that prescribed it. He said “I bet if you call them and ask to come off they’ll say ‘sure’ because it’s not real. If they say ‘no, I need to see you’ then they’re actually concerned… but they won’t.”
Then he saw the carvedilol and started going on and on about how that was toxic and a 27 year old shouldn’t be on it and “it’ll lower your blood pressure and stop adrenaline and make you tired.” He wouldn’t listen to me explain that I was on it specifically to lower my blood pressure and stop my adrenaline because my blood pressure was totally out of control otherwise and it had helped a lot.
He said that I needed to come off of all of my medications, that I needed to see him every week or two so he could “be your internal medicine doctor,” and that we could then run some tests to see about MCAS and any immune problems.
At one point, I forgot exactly when, he was trying to get me to admit I was faking my fibro, when I said “I believe it may not be ‘just fibro’ but could be due to my hypermobility condition.” “Oh, do you have EDS? Have you been tested?” “No, the adult geneticist that I waited 18 months to see because there’s only one in Colorado, did an exam and determined we didn’t need to do testing because I did not fit the criteria for any of the testable EDS types. Due to the new classifications that have come out, he gave me the diagnosis of generalized hypermobility spectrum disorder.” “So, he blew you off too?” I just shrugged because the appointment with the geneticist had not felt like I’d been blown off.
Also, at some point (when trying to prove I wasn’t just “acting sick”), I mentioned that I had actually finally gotten to a point this summer where I was doing extremely well for me and had been able to do a lot of the stuff I hadn’t been able to do in years. But then, suddenly, in December, my body crashed on me. He nodded with another smile, as if I had proved to him that I was indeed faking my conditions.
I left the appointment in shock because I had never been treated that way.
After my appointment, I was in shock for quite some time. I messaged a few of my chronic illness friends because I was confused and unsure about how to process what was happening. They all responded immediately with absolute outrage. I tried to defend some of what he’d said, but barely had any form of argument. “Well, I was sick of swallowing pills, so coming off some of them probably won’t be too bad” or “MCAS causing some of my fibro pain due to the mast cells attacking my nerves could make sense” were the extent of my rebuttals.
After I had more time to think, I was getting angrier and angrier. By that evening, I was livid. I went into a total meltdown and went into a screaming and crying rage for about 30 minutes. My husband was still trying to process everything and was surprised at exactly how emotional I was… but he understood my reasons for being upset (the best he possibly could). I decided that the next day (because it was 7pm by then) that I would call my PCP, talk to her about what had happened, and get recommendations to different immunologists.
I called my PCP after I woke up to get an appointment ASAP. When I gave my name to the receptionist, she said “your name sounds familiar… oh, here it is. Your doctor, [Dr Jerk], called and talked to [your PCP]. She wants to see you and your husband for a 45 minute appointment.” My jaw just about hit the floor. Wait, what?! I have no idea what he said to her, but we are going in on February 15th (the first 45 minute block she had available) to find out.
In fear, I called my mother and told her the entire situation. She was just as livid as I was, and just as upset as my friends had been. We agreed that I needed to write the entire thing up ASAP, so that I wouldn’t have to worry about forgetting details, and that I needed to get Dan to do the same. I also needed to get into see as many of my doctors as I could, as fast as possible.
Thankfully, I am seeing my favorite doctors all very soon. I also have several other doctor appointments scheduled now. The next two weeks, I have a massive amount of appointments and I’m dreading every single one of them.
Dr Jerk’s office also called to schedule my follow-up and I told them that several of my doctors wanted to see me first, so I wouldn’t be able to schedule for at least two weeks (when I was done with all those appointments). I do not plan on going back to that doctor.
I’m hoping that I can find another doctor in the Denver metro area that is knowledgable with MCAS so that I can get a diagnosis and get on a treatment plan that actually will help minimize these reactions… and another immunologist that can help me figure out why my immune system stopped working and how I can fix it.
16 thoughts on “The Appointment from Hell”
All too familiar I’m afraid. I’m sorry you endured this but this is EXACTLY what all with FMS endured 20 years ago.
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Sadly, a lot of us still get that (I’ve gotten it too). I was actually surprised he decided to go off on the dysautonomia and NOT the fibromyalgia…
Oh my goodness as I read this an anger started welling inside me. This Dr Jerk is just plain dangerous. At the time I know it hard to say anything because they talk over you. Its only on the trip home that you start thinking what on earth just happened. I am sorry that this Dr was a jerk. I could actually think of a few more names but i am afraid they are not printable. I saw a specialist once for my Thyroid, my integrative dr was concerned about the nodules that I have and wanted him to see me as he thought as I was having trouble swallowing and eating that perhaps the nodules were growing inwards. So my friend took me. She stayed outside. I wish she had gone in with me. He dismissed everything that my dr had written. He wouldn’t let me speak. he wouldn’t look at me. Got me to lie on the bed and ran the ultrasound thing he had over my neck. it took a total of 5 mins to see him, wait at reception and then pay my bill. My friend had gone outside for a smoke she came in to to to the loo and I was already waiting for her. Lucky I went to my gp and he said he didn’t even get a report from him. I told him what happened and he said well thats the last person I send to him. Their are other thyroid specialists out there who are better than that….
Oh that’s awful! I’m so sorry!
We actually call him some unprintable things at home 😉 It’s petty, but it makes it all hurt a little less. It is so frustrating not being able to think of anything to say until much later!
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Yes I think our brain freezers over while in the drs room. We expect so much from them after all they are supposed to help us not make us look like idiots.
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First off..we’re in the same city 🙂
I could have written this post, and just inserted my diagnoses instead. I had a doc threaten to commit me because I was being “hysterical” and the lab work he ordered showed I was fine.
8 years later and I get a diagnosis of a rare form of muscular dystrophy.
I’m a feisty one..I would have called the office manager and complained. You can also make a complaint with the state. I mention this because I see far to many women being blown off by doctors, and it is killing some of us from neglect.
I am grateful to you for sharing your story. The more we get these things out, the more the medical community will come around (hopefully).
Dr. Jerk sounds like a quack, and not a harmless one.
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Since we’re in the same city, do you happen to know a resource that lists “reportable offenses” or similar? I do want to report him, but I’d rather have the ability to add in “he violated XX” instead of just the “he’s a jerk necause I say so” type of argument.
“Hysterical” … What, are we in the 40s now?! Wow… That’s, uh, ridiculous!
So sorry you experienced this Elizabeth. You must be wanting to get to your PCP asap to find out what on earth was said.
It’s just unbelievable but sadly I read of similar experiences far too often in my forum. 😢
In my gynecologist appointment (yearly checkup) today, my gyno gave me a copy of the note from Dr Jerk. He sent it to every single one of my doctors.
Though, I am still worried about what my PCP appt will be… I have no idea if he talked to her outside of the letter, what was said, what her reaction to any of this is, nor why I need such a long appt with my husband…. 😞 I’m definitely wishing it was a sooner appt, as I really hate not knowing…
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I have had a couple of bad doctors who screamed at me, but nothing like this. The bad thing about it, is later, you wish you would’ve stood up for yourself more, but you are so stunned, you just don’t. I am so sorry you had this happen to you.
OMG YES! I’m trying SO HARD to not beat myself up about it… Because I was kinda in a “are these things coming out of his mouth?” silence. So annoying. I did stand up for myself once or twice, but ugh.
You had docs scream at you?! Wow… That’s, so strange… Those are the only words I have. Unprofessional, at the very least. Yikes. I’m so sorry!
How infuriating. My first rheumatologist gave me a diagnosis that no longer exists – benign joint hypermobility disorder – and better doctors are still trying to figure out if it is even worth the cost to go for genetic testing or just convert it to generalized joint hypermobility disorder. Not all the EDS types have genetic markers, apparently, but I’m still not an expert. If you already have that and the dysautonomia – surprised he’s not aware of the emerging evidence for a triad of dysautonomia, some type of hypermobility and some type of immunological disorder/MCAS. But, then again, my equivalent jerk doctor gave me an out-of-date diagnosis and entirely missed the dysautonomia. So, not surprised really. 😦
I was originally diagnosed with JHS, because my rheum wasn’t confident enough to make an EDS diagnosis or any of the other disorders. After the geneticist, since EDS was reclassified last year, I received the diagnosis of “generalized hypermobility spectrum disorder.” Had I seen him about 5 years ago, I’m almost confident that I would have had hypermobility EDS diagnosis… But my physical therapist has really helped me get better control of some of my hypermobility!
I believe hEDS is the only one without a test, currently. It’s also the most common.
I wish I’d had a paper showing the triad. I just wasn’t expecting to have to prove any of my existing diagnoses 😥
Wow… there are no words.
I’ll send you a message on Instagram with his name to make sure you don’t end up in his office since we live close enough together.
Thanks. I was actually just thinking about messaging you as i just finished with my school work and was thinking about your post again.