1. Community
  2. Chest and lungs
  3. Pulmonary Embolism

Advice on PE misdiagnosis!

Posted , 6 users are following.

Cooptheloop
Cooptheloop

Hey guys,

I'm 21, and 8 stone. So in May I attended an Out Of Hours GP with complaints of chest pain. Up until this point I'd had a fair few ECG's, Echo, Stress Test and blood work done due to ongoing anxiety surrounding my health.

However this pain and difficulty in breathing felt to real to ignore. So he sent me to get my D-Dimer tested, the nurse said it came back positive and sent me for a CTPA scan which was negative. The All clear? Nope!

10 days went by and the pain and my breathing worsened slightly so back to A&E I went, redid D-Dimer and it was still positive, another CTPA showed an tiny equivocal filling defect in the lingularbon the peripheral branch of my left lung. Clinically the consultant didn't believe I'd had a PE but the radiologist said maybe and the doubt was to high not to treat. I was started on Rivaroxaban and awaited a respiratory referral, they said that upon looking at the images they could see no real eveidence of a PE and said it was likely 'motion artefact' and the rivaroxaban was stopped.

So my concern is I was and still am immensely inactive, which has been happening for a few months as well as having a heavily reduced fluid intake for a few months also, so I know I'm at risk of clots. I'm still having chest pain daily, breathing difficulties, pain in my legs, I have to walk incredibly slowly and get very dizzy often and have had swelling ankles on and off.

I don't have panic attacks anymore or any real physical anxiety so that avenue as an answer doesn't really work for me. Just mental anxiety over that positive d dimer and the coincidence of the motion artefact, and my symptoms.

As far as the doctors concerned I didn't ever have a clot and they don't know why my d dimer was positive but obviously I'm still in immense constant discomfort. What on earth should I do next?

Any help or advice would be greatly appreciated!

0 likes, 18 replies

18 Replies

Prev
  • belinda45747
    belinda45747 Cooptheloop

    Posted

    With the symptoms you have it sounds like a clot if I was you I would request a different consultant sometimes they don't get it right. I would go back to your doctor concerning fluid in your legs sounds like water retention he may give you water tablets. I had a Pulmary embolism clots on my lungs the hospital only told me I had one clot but I have more. I am on warfarin now for rest of my life. The consultant told me I would be back in gym in 3 months that never happened. I struggle with breathing and my whole life changed I struggle daily with mobility. Hope this information helps you Belinda

    • Cooptheloop
      Cooptheloop belinda45747

      Posted

      Wow I'm sorry to hear that! How did the hospital only diagnose one clot? Was it a CTPA scan?

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.