i had the exact same experience. i couldn't breathe and hadn't eaten a thing or really slept in three days before the pain became intolerable and i decided to go to the er. it took all night for them to diagnose me. i was 18 at the time, puking and sobbing whenever i wasn't dosed (they were cruelly sparing with the meds until after they diagnosed me). i was in a teaching hospital so every fifteen minutes they would bring in new students to palpate my stomach (which was by far the most painful part) and ask the same questions over and over again. later when looking at the case file i found that 3 different consultants had referred me to the psych ward!
what i wouldn't give for someone to properly explain why a pe is such a difficult diagnosis and why the doctors give patients no clue about what to expect in recovery!

This is a big issue for me, because I think there needs to be better education within the medical community so that they consider PE's a possibility when someone has symptoms.

I have no proof of this, just what I know I felt, but I had a terribly difficult delivery with my son and about nine hours after he was born I was talking to a friend on the phone and suddenly felt like someone had punched me in the chest and I couldn't breathe. My friend could immediately tell the difference and even repeatedly asked if I was okay. I called the nurse immediately and said how I felt, the doctor came and listed for about 3 seconds to my heart and said everything was fine, that I was probably having an asthma flare-up, which would have been weird considering I've never had asthma in my entire life. Though I continued to complain about this throughout my short hospital stay, nothing was ever done and I went home. Now I think that I had some small clots even at that time. Because I continued to have some difficulty breathing over the course of the next month, though it wasn't enough to make me go to the ER or anything. I might have been able to get over those myself with no treatment, problem is that I had a DVT in my pelvis that continued growing over that time too, and eventually I had much bigger clots embolize, so that I had massive bilateral PE and a huge saddle clot caught in the middle. So what frustrates me is that my situation was made exponentially worse because no one paid attention to me when I began complaining about problems breathing. And it's not a stretch to say that I easily could have died because of it. I wonder how often our situations are made worse by doctors not considering PE to be probable, and worse, how many people die of PE because of it.

Thank goodness your doctor decided to "err on the side of caution" and the the CT. Part of the problem is this is still considered to be an old peoples' problem, not something that young people experience, despite all of the evidence here that it does indeed affect young people as well!

I was told by a Pulmanologist (spelling) at the hospital that PEs are hard to diagnose after they found mine and that usually thay don't find them until an optopsy is performed. I had very bad pain in my right lower leg and very short breath while in Afghanistan and all they did was a chest xray and said i had an infection. It wasn't until after deployment that while in the ER at a lcoal hospital did they do a ct exam with fluid and saw the massive clots in my lungs and did a ultrasound of my leg finding the DVT. They said I should have been dead. All this ONLY after my wife told them I had a PE back 86. At first they said my heart was fine and nothing was wrong. Go figure. So your not alone, were just glad they found ours right. Think of how many people have complained about the pain and was blown off and have died. Very Very sad.

Oversights and mistakes are so scary with these PEs. I saw the Dr two days before calling 911 - it was felt that, since I had a mild case of COPD, that this was just an exacerbation of that condition. At home I did all of the wrong things thinking I was helping with the COPD - exercising, breathing exercises, on and on. Panicking, breathing hard and getting dizzier by the hour.

At the hospital they did a CT scan and found the PEs but they also claimed I had an abdominal aneurysm of the aorta and would have to be rushed to another hospital for surgery. Lucky for me - another technician came in and did an ultrasound and there was no sign of an aneurysm - chief radiologist confirmed this. I was lucky I didn't just die of fright!! lol

Many of us have horror stories about missed diagnosis or misdiagnosis of PE. I was dragging around for two weeks with SOB and tachycardia and getting told it was asthma. I had to collapse and be taken to the ER before anyone thought in the direction of PE, although I'd had a DVT four years previously. Even then, the ER did NOT diagnose me, and it took a bright young doc in cardiac intensive care to think of PE and do the tests. My d-dimer was over 4000 when they finally took it (hours after my ER admission). So, yes, it's common to have to "fight" to be diagnosed. The other problem, of course, is the almost total lack of understanding by physicians of what recovery is like. The doctors in the hospital told me when I was released (one week after the massive, bilateral PEs), that I could go back to work. Ha!! It took me 3 months to do that. They have NO IDEA what patients actually experience. Thank goodness we have this forum so we can compare notes, be reassured, and support one another. Be healthy!!!

I think the hardest part, for me, of having a PE was the fight to get a diagnosis. Mine was first suspected by my primary care doc (she's actually a physician's assistant, but she's amazing!). She ran a d-dimer when I told her I couldn't breathe, and as soon as she got the results she sent me to the ER for a CT scan.

The ER doc told me to go home and sleep it off because it was more likely to be a cold or an asthma attack than a PE. He even gave me an albuterol treatment even though I have NO history of asthma, and it gave me a bad reaction and almost killed me. I spent 30 minutes BEGGING for a CT scan, and he spent that time telling me it wasn't worth it to have the radiation exposure. He finally relented when I told him my husband would ruin his life and career if I went home without the CT and died of a PE. When the scan showed multiple bilateral clots, he refused to even look at me when he told me the results, and quickly passed on my care to another doctor.

The doctors at my primary care clinic seem to have a policy to ALWAYS consider PE as a diagnosis when someone has unusual breathing symptoms, especially when the patient is young, female, and taking birth control, which is how they saved me, plus it gave me an idea of what tests I needed once I was in the ER so I could advocate for myself, and I think that's awesome. Unfortunately the hospital in my town has a tendency to always try to send people home, no matter how sick they are, which I think is criminal.

Wow, I'm glad that I didn't experience what you all did. I went to the emergency room actually thinking I had pulled a muscle in my back. They did an x-ray, blood work, and then came in and said that I needed a ct scan. All the time they were always very concerned on my pain level, and made me very comfortable. I figured something was really wrong when he said he wanted to do a full ct scan including my chest area. (I never had the chest pains until I began to recover, and now...they just won't go away). The doc came in and let me know I had pulmonary embolisms and I would be admitted to the hospital that night. That was scary! The funny part is the hospitalist doc that was on call that night was a brother of a guy I graduated high school with. So, it was a little more comforting that I knew his brothers. The bummer was I was suppose to leave on a cruise with my whole extended family. Needless to say...thank goodness for trip insurance...never leave home without it. I'm so sorry that you all had such horrible experiences and the PE itself is enough of an experience. It doesn't help when no one will listen.

I am a nurse, and yet I still didn't catch the signs in myself until much later (after a disappointing visit to the doc- I felt like I was seen as a hypochondriac for complaining of mouth and jaw tingling on one side, with a muscle spasm in the jaw. ) two days later I developed a horrible 'bronchitis' of which was really showers of PEs. I was wheezy at night, and had to be propped up to sleep, getting short of breath with mild activity. But I didn't want to go back to my doctor for another silly problem. I was 30, losing weight but still obese, and had never had a clot.Yes, PEs were in the back of my mind, but I never had any pain in my legs to suggest a DVT, nor any immobility to create stasis of blood. I went for 2 weeks , slowly filling my lungs with clots, blaming myself for not being physically fit enough to walk a good distance without being SOB. I passed out in church after having sudden chest pain, more liek indigestion, and more SOB. The EMTs came, and I told them I thoguht it was a PE. But they checked my vitals- which were all 'normal', (partly because I didn't want to pay for an ambulance bill) and said it was probably anxiety and I should go to my regular doctor appt already scheduled for the next morning. So my friends were with me at church.... and I nearlly passed out again, so a friend took me to the ER. I wish I had taken the ambulance. I sat in the waiting room for a long time, too dizzy to hold my head. When I got back there, the nurse was rather rude, until a diagnosis was finally made and then she became one of the best nurses I've seen down there! It's hard as a nurse- especially in the ER, when there really are a lot of drug seeking people out there. The doctor in the ER agreed that it was likely a PE as I had been on YAZ for 8 weeks. It took a really long time to get the CT though, but the ER doc watched them do it and met me in the hall to tell me I had a massive shower of PEs in both lungs, and was in critical shape. (at this point the nurse was much more helpful). I was admitted in the middle of the night to the pulmonary unit, depsite being told I was going to an ICU, and had to have my other nurse friends fight to get me better care. Now, I work with these nurses all the time, but let me tell you that I have never had the experience of being on the other side of the bed like this. I finally called my doctor and had him transfer me to an ICU, which should have been done anyway as my heart rate was so high.I also had some heart damage. I spent 6 days in the hospital. My doctor wouldn't tell me when I could go back to work until 4 weeks after this! He said I would not feel like myself for about a year. I was found to have factor V Leiden also. It's been a slow and long process, and I have been back to work at my easy second job for a month now; today was my first day back at the hospital (3 months out) and it kicked my butt. They had me running up and down halls, and I was only there for 4 hours. I stopped once when I was getting winded, and my sats were 85% and BP 148/109. I don't know about this....
sorry to ramble, it's a bad habit of mine.
While I knew the signs of PE, I didn't think it would happen to me. One of my goals for later in the year is to get the word out about PEs in younger people and factor V Leiden.

Wow! I can't imagine how frustrating that would be. I'm another case of having great doctors. I went to my family doctor for what I thought was a pulled muscle. (My husband actually forced me to go. I thought it was a waste a time.) My family doctor diagnosed pleurisy and sent me off for a chest x-ray. That night a doctor from the office called our house after office hours and insisted we go to the emergency room immediately for a CT scan. I was upset because I hadn't considered that I wouldn't be able to nurse our three week old son. The maternity department (we had just been there three weeks ago) gave my husband all sorts of formula so they could stay with me until we knew what was going on. Everyone was great throughout my experience. Well, maybe not everyone- but most! The maternity department loaned me a breast pump so I could pump during my five night stay. I can only imagine how scary it would be to have to fight for the diagnosis.

I had a similar experience. I complained of chest pain for about 5 days before I was actually diagnosed. I went to a walk in clinic and the nurse practitioner listened to my story and told me it was probably pleurisy or pneumonia and sent me for an Xray. As I was leaving the visit she said, "It almost sounds like a PE, but you're too young for that." The next morning I woke up coughing up blood and then we knew it was serious.

It took me months, literally. Mine were small, obviously, but yeah. Months. :/

One of the lessons I learned was to not self-diagnose (I took myself to my allegist--should have gone to my GP).

After reading so many bad experiences here, I realized how lucky I was.

I first complained of shortness of breath and tiredness to my GP, who brushed it off as caused by anxiety (even though I assured him I wasn't particularly anxious) and sent me home.

The day I went to the ER, because I had shortness of breath (I couldn't even finish a single sentence without pausing for air) they made me a priority... and 10 minutes later I was being seen by a doctor.
5 hours after going to the ER, I was already in the ICU starting treatment, and had a correct diagnosis.

My "luck" might have been influenced by 2 factors: first, my country has free health care, so they don't hesitate so much to ask for exams, and second, I'm a student nurse and so I could explain my symptoms more clearly and reject any wrong possibility the doctors came up with.

Here's the details of my experience: http://www.dailystrength.org/c/Pulmonary_Embolism/forum/8325710-my-young-experience

My doc was called at 11pm and she told me to relax that it was probably a panic attack. But to go to the ER if I was REALLY scared. DH took me in. The Dr there thought enough to skip all the usual tests and go straight to the cat scan where many bilateral PEs were found. I wish she was in private practice. I'd hire her for sure. My regular Dr?!.. a few years ago she sent DH home for the weekend with phenegran (sp) for nausea and severe vomiting. Turned out to be a ruptured/leaking appendix and emergency surgery was done the following Monday AM.

No. I don't know why I'm still with this doctor.