I my DVT and my PEs were misdiagnosed or basically ignored and brushed off, by three different doctors, one of who was my GP. The PE I can see, since symptoms can be anything. The DVT I can't see since I had classic symptoms. After I was out of the hospital, I made an appointment with my GP and told her I just got out of the hospital with massive PEs. She didn't know because she was in a different medical group from the hospital I went to so she hadn't received my medical records yet.

It was my GP's colleague who really was the most errant. I saw him the day before I collapsed from my PE to have him look at my leg. I had initially seen an urgent care doc who diagnosed my DVT as phlebitis. Then I followed up with my GP shortly after and considering the urgent care's doc's original diagnosis, she suggested we keep an eye on it and if it got worse, come in. Well it got worse and my GP doc was out of the office so I saw her colleague. He told me to go to the gym and work through the pain, despite the fact that my DVT had now moved from my calf up to my thigh. The next day, I collapsed.

So I met with my GP and I went in with a very realistic expectation as to how she may respond. And I also went in with a very clear understanding of what I wanted to accomplish, which was to make sure that she knew what happened so it didn't happen to anyone else and to tell her I could no longer be her patient. I didn't expect her to admit fault, for fear of litigation. I do get that. If I'm honest, I guess my other motivation is that I just wanted to be heard, regardless of what she would have to say. So in a sense, that was enough, that I had my 15 minutes to say, you and the entire medical community ignored me. I felt so good after expressing that. And then the icing on the cake was that my GP gave me a hug, told me she was sorry and said she'd meet with her colleague to bring it to his attention as well. That was above and beyond what I thought would happen, since I thought she'd say nothing, or redirect the discussion because I do get that doctor's protect themselves from being sued. Anyone who works in any company gets the concept of covering your ass.

My point... how docs respond is completely out of your control, and sometimes it has to be enough to state your issue, how it affected you and that you hope this is a learning experience for the doctor going forward. To hope for anything more than that will leave you really disappointed because most doctors aren't going to admit fault and with regards to PE diagnosis I think it's really hard to prove fault actually since the symptoms of a PE can mirror other things.

I think it's important for everyone who was misdiagnosed to have a discussion or write a letter to the doctor. It's cathartic and regardless if they respond or not, it's on the record. There is some satisfaction in that because it's taking control when you feel like you have none.

I had that same response with a shipping company that I reported to the Better Business Bureau ... they responded with pretty much lies. I mean, yeah, you want to give them a headache for such (just to return the favor). But, at some point, you have to let the anger go, cause it'll eat you up inside.

My PE was misdiagnosed as asthma issues also. (I do have minor asthma.) I saw a PA at a minor emergency clinic the night before I wound up in the hospital with multiple bilateral PEs. He told me to take Benadryl and try to get some sleep. The fact that I had a clotting history and my severe SOB came on quickly didn't even seem to register with him.

I was talking to my doctor on the phone the next day while I was in the ER. She had called to check on me after getting the results of the CT. I told her about the PA and asked if someone could call him and let him know what my diagnosis actually was. I didn't want to sue, I told her, just wanted him to know what he had missed so that maybe the next time he wouldn't miss it again. She said she'd have her PA call and talk to him as equals... I hope it happened, I really don't know. If I had made that big a mistake, I'd want to know, I think.

Yeah, PEs are hard to diagnose, but I really think there are times when they're a little too quick to throw in a cookie-cutter diagnosis and not look at the whole patient or the history. There are times when a little more due diligence is necessary.

My asthma and allergy doc was the one who finally sent me to the ER for a CT ("just in case"). He thought he knew what the problem was but (he told me later) he could just look at me and know that something was seriously, seriously wrong. I don't know where docs get that sort of sixth sense, but in my case I really think it saved my life. In his gut, he really felt like it was something other than what he thought.

I hope you get some sort of resolution from all this. I doubt he'll lose his license or get any other sort of major punishment, but maybe (just maybe) he'll think twice before handing out that diagnosis to someone else with similar symptoms.

My PE was misdiagnosed as severe pneumonia. I had a chest xray and that is what the radiologist determined. Now I know that a PE is very difficult to detect on xray unless you are specifically looking for it. I did mention to my GP that it was odd that I did not have a fever, hacking, just pain but he worked off the radiologist's writeup. It's a common human failure, we start with a suggestion and get stuck on it. I'm not upset about it. I know that I have LFV, my father had a minor PE around my age, I suppose that I should have suggested it to my GP. Oh well, I'm still here.

Aussie---- good for you and I hope it both accomplishes something and also that it doesn't come back to bite you in the butt! (grin)

@theoldman---

***Oh well, I'm still here****

Yes, you have to be thankful for that. But, not to point a finger at you, because each person's decision (which I respect) as to how much they want to persue 'complaint' is theirs solely----- everytime some one is laid back about an issue that involves their health (talking a wrong dx that led to serious complications) then we're giving overt permission for that person/doctor to continue in their behavior.

theoldman----please excuse my rant and please know that it has nothing to do with you---- I'm talking generalities.

Then there's the other side of the coin. If a person files a formal complaint against another doctor----- that goes out to all the doctors. (In the past I was a member of an Internet site that had quite a few doctors on it. Oh, the things you learn!)

It might affect who a person can get as a doctor in the future. There are such things as 'red flags'. Sigh. There is no easy answer.

I wouldn't have complained if I had classic asthma symptoms, but I told him it didn't feel like asthma at both appointments. He also ignored me when I said my feet were numb and my lips were numb and tingly and he gave me 4 different meds (at two different appointments) before running any medical tests at all except listening to my chest and doing BP and pulse. I don't care if he gets what he deserves but as RMB says it's cathartic to tell him about his wrong doings. Especially since I am sure he has erased many from his memory as a self protection instinct.

I went to my doctor two weeks before my PE complaining of leg pain and swelling I was post hysterectomy and she stated it was just fluid build-up. This was a doctor filling in for my regular doctor who was on vacation. My GYN was the one to
Misdiagnosis me. I presented with problem and it was dismissed I almost died and my 9 children almost lost their mother. Since my PE I have heard several complaints regarding this physician. My GP is livid he put in his notes that she was negligent. She wouldn't even return his calls or see me in the hospital when it happened. The entire practice is trying to do damage control. I do have a lawyer and my insurance company is also fighting their money. I trusted the doctor and all she had to do was write an order for a ultrasound but she was in a hurry and it nearly killed me. My GP says that is why they have insurance. They need to know that we are people's not just another patient on their schedule.

Aussie - thank you so much for starting this thread! I am new to this group, and I really appreciate seeing this thread. My PE was properly diagnosed, but my DVT symptoms were brushed aside by my knee surgeon during my visit to him 3 weeks after my surgery.

I feel kind of stupid because I think i should have known better, but I didn't want to rush myself off to an emergency room when it wasn't needed.

Here is the gist of what he told me: "you may have a superficial clot on the outside of your calf, but it's harmless. If you want to put your mind at ease, you could stop by any ER and ask for an ultrasound. I recommend using heat on your calf and ice on your knee to increase blood flow and take advil."

I thought he was brilliant. My symptoms immediately started to go away. My leg was feeling better each day...until the 4th day when all the pain was gone in my leg and I ended up in the hospital with horrible chest pain and multiple PE's (and a DVT still in my leg as well).

Now I'm left trying to decide how to handle this situation. I'm supposed to go for a follow-up with the surgeon in 1 1/2 weeks. I don't like confrontation. My husband is livid. I think I just want to Keep other people from not being treated properly when they have DVT symptoms that can lead to PE. I probably also just want him to seem concerned and possibly apologize.

After reading other people's experiences, I'm thinking that I should probably see a different doctor for my follow-up and then send a letter to both my surgeon and the medical facility asking them to consider taking more aggressive action when people have symptoms of a DVT. I want to explain my symptoms in detail and exactly what it turned out to be.

I'm afraid that if I make it more of a complaint then the surgeon will be more apt to dismiss it. He's a top knee surgeon in my area. I'm sure he'll think that anything not specific to the knee is not his concern. I also don't want to ruin his reputation in his area of expertise. If he had simply said, go see your primary care doctor, I would have done so immediately.

I'm still on pain medicine, so I may not be thinking clearly. Any thoughts or suggestions would be appreciated. Other than these initial ideas, I don't really know where to start.

@daffnae
*** I just want to Keep other people from not being treated properly when they have DVT symptoms that can lead to PE. ****

Good for you for that attitude! But I wouldn't expect him to apologize! (That gene is removed when a person gets their medical license.)

If he does---- please let us know and we can put his name up for doctor of the year.

When he said "go to the ER" ----- that will be his CYA and if ever confronted he will lay the responsibility right at your doorstep for not going to the ER "when he told you to". Sorry, that's the harsh truth about how almost all doctors work/think.

My Dr did apologise in the last sentence of his 4 page letter addressing my complaint. But I feel it is insincere since it was said following 4 pages of him trying to justify his stuff up through poor note-taking, poor memory, lies and patient error!!!!

I was misdiagnosed by my GP when I presented him with classic symptoms of PEs - but I knew almost nothing about PEs at that time. He said I had a mild case of COPD and he sent me home to a terrifying weekend alone with escalating symptoms until I called an ambulance on Monday morning. The scan at the hospital revealed massive clots in both lungs.

I later learned that my Dr had never dealt with a PE before - ironically his own father died of one during the final stage of liver cancer.

My husband's pancreatic cancer was misdiagnosed three times in three months which allowed it to progress easily to stage IV. I guess I have some reason, too, to be paranoid about Drs. He died a year later

I just had a CT scan last week in order to eliminate lung issues other than the PEs - and also to see if those clots have finally dissolved after 2 1/2 years. I'm still always hopeful that I will get the answers I need.........

@Cindy

You said:

*****I was misdiagnosed by my GP when I presented him with classic symptoms of PEs - but I knew almost nothing about PEs at that time. He said I had a mild case of COPD and he sent me home to a terrifying weekend alone with escalating symptoms until I called an ambulance on Monday morning. The scan at the hospital revealed massive clots in both lungs. ****

That's almost identical to the experience I had with my first PE, except I wasn't given dx of COPD.

Hi
It seems we all have had similar experiences. My family doctor sent me for scans when I first had calf and thigh pain. When the results came back confirming a DVT I was put on Clexane heparin for a month or so. When I began complaining of extreme SOB after exertion he said it was because my lack of mobility with the DVT had caused me to become deconditioned and unfit. His recommendation? Get out and walk more and get back to lifting my weights.
When one day I had to practically crawl into his office he decided it might be time to get my leg scanned again. The guy doing the scans didn't even bother to finish the ultrasound. The clots were beyond my groin so he sent me straight to the ER. Sure enough multiple bilateral PE's.
When out of hospital a month later I confronted my doctor he at least had the good grace to apologise and to wonder aloud why he had not thought of PE's when I was so breathless. A doctor's worst nightmare he said - missing something quite obvious which might have proved fatal. I did not disagree and he made no objection when I asked for a copy of my records as I was switching to another doctor. Guess he was glad I didn't report him for negligence or sue him for malpractice.

Larry

Larry, my situation was similar with the apology. I actually appreciated hearing my doc say she was sorry. Whether she was sincere or not, or glad I wasn't suing, I'll never know. We can't control nor know what anyone else's intentions are except for our own. So given that, and short of pursuing litigation, sometimes just issuing a complaint, talking to your doc about what was missed, etc, regardless of how they respond, has to be enough particularly when you know the truth.