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Negative results...has anyone else struggled to get a diagnosis?

Posted , 5 users are following.

Kate500
Kate500

Hi, I have had a PE and a DVT in the past and believe that I have a PE now. Had unexplained calf ache starting 12 days ago, after the pains didn't alter over 3 days and felt just like my 2 previous DVT's I went to GP, I have no swelling but did not have on my previous DVT's either, he clearly thought I was mad but did a d'dimer. It was very low, 80 and I was told I was clear. I returned to GP 2 days later as the pain was spreading up the inside of my thigh to groin as with my previous DVT's, I was told nothing would be done until the week after. The next day I felt slightly winded while walking, I ignored for 2 days and then went to A&E on the Sunday, they gave me Heparin (and 4 doses to take home) despite another low d'dimer 95 and referred me for a Doppler. I had this 2 days later and it was clear. My chest pain worsened I cannot walk and talk without getting breathless (I am a jogger this is not normal!) have a continual ache between my shoulder blades and a pressure on my sternum. I went back to GP and was told they wouldn't do anything and he "had no idea" why I feel breathless and exhausted and could only suggest going back to a&e if I wanted to. This morning I did and was just given an ecg which was fine and a pat on the shoulder told to stop worrying and that I am clearly anxious. I agree I am anxious, but only because I do not feel listened to. My PE was because of an undiagnosed DVT and my last DVT took 3 weeks, 7 GP appointments, 3 physiotherapy appointments, 2 Dopplers and a lot of frustration for me to diagnose as O knew on day 1. I am doubting myself but do not believe that this is all anxiety, my first clot was 14 years ago and I have only suspected a clot once when it hasn't been since then so it's not like I'm a regularly presenting with claims of a clot. Has anyone experienced anything like this? I don't know how hard to push for someone to listen to me. Thanks

0 likes, 3 replies

3 Replies

  • titanium
    titanium Kate500

    Posted

    Hi Kate, be as forceful as you can. My husband didn`t survive an Achilles Tendon injury.!!!

    Read " Avoidable DVT Death of my Husband "

    The shortness of breath is most definately not a good sign.

    If your GP won`t listen, go to a walk in centre.

    The complacent attitude of some medical staff is life threatening, my husband died because of their negligence.

    Don`t be afraid to demand further scans, MRI, whatever it takes.

    Yes, they will make you feel as if you don`t know your own body best, don`t be intimidated, stand your ground.

    Please let me know how it goes.

    Take care, Lyn. x

  • cathy428
    cathy428 Kate500

    Posted

    I would keep trying.  When I had my first DVT I was taking the pill many years ago, and was diagnosed with DVT within a week of starting it whilst on holiday in UK.  Three years ago I started coughing and became breathless, I went to the GP, was told, it was a "virus", then next time, it was "asthma", then "whooping cough", then it was thought I had COPD (non smoker).  After a year I worsened, went as an emergency, and was immediately sent to A&E, seen within 5 minutes, diagnosis - PE.  My skin was grey and my lips were blue.  I also had a DVT (no symptoms until after starting warfarin.  While on warfarin I started coughing up blood and had bleeding gums, (never happened the previous time), and was dismissed by yet another GP as being "a rather anxious patient".  A year later the same thing happened, sent to A&E again, sent to A&E, now told I had "chronic bronchitis". This year I have had similar symptoms, and yet another GP gave me an inhaler, which makes me hoarse.  This last GP has now retired and I have given up hope of getting an appointment with the only decent GP now available, so am suffering.   Doctors seem to think you are being "anxious" for no reason, not so.  I may change practices as I am fed up with being fobbed off.  I hope you get this sorted soon.  
  • JessB1986
    JessB1986 Kate500

    Posted

    Hi Kate..I am also seeking advice with very similar problems. My sickness started about 4 months ago, before then I was generally healthy..then started the ER visits due to chronic vomiting, diahrea, rapid heart beat, dehydration and chest pain. I was admitted the first time from dehydration, had very critical low potassium..and gave me iv fluids and potassium all night, discharged the next morning..no further testing besides the bloodwork. I couldn't keep the Rx of potassium down and still had the same problems. I ended up losing about 50lbs in this short time, so they started looking for gastro probs since all my vitals were fine. Still no answers, and finally I felt like i was on my death bed after being sent home from ER about 5 more times after the admit. A doctor finally decided to run some tests...little did I know I had a DVT that was previously misdiagnosed as superficial throbitis i believe, which is just inflamed veins..on top of that though, I had E. Coli Pneumonia in my right lung and several large Pulmonary Embolisms (clots that have moved to lung) I stayed in the hospital for about 6 days and went home on antibiotics and blood thinners. I've had several follow up appts (got out about a month ago) and no one has ever checked to see if the infection is gone or PE's are getting better..I am starting to get very worried, since my lung specialist basically told me I was very lucky to have survived! I and starting to feel the pain again in my chest and back, still very weak, and don't have hardly any appetite. Be pushy, you know your body and what's normal for you...if you don't feel like they are doing everything they can to figure the problem out demand it! I'm going to..Good luck to you
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