Reader Interactions


    • Anne Sweet

      Thanks Tina x I do have every respect for everyone in the NHS (my nurse the other day jumped through hoops to help me.) It is an impossible task to get it right all the time, it’s just so sad that even with not so rare conditions it takes so long to get a diagnosis.

  1. Jenny @thebrickcastle

    I took my partner to hospital because I believed he had meningitis. He was given immediate anti-biotics and admitted with “chest infection”. They’d x-rayed him and couldn’t find any chest infection, so they decided it must be hiding. If it looks like a duck and walks like a duck it must be a mouse, eh.
    It was 21 hours before he was actually found to have meningitis.
    You hear it all the time and I am so very sorry about your father-in-law, that’s horrific 🙁
    Doctors are so stressed and overworked now, the NHS is on it’s knees. It’ll only get worse before it gets better sadly 🙁 xx

    • Anne Sweet

      Exactly Jenny, that’s why we with rare conditions are zebras, because we are not horses and that’s what the Drs are looking for. They admitted me thinking that I had MS but the young doctor was quite adamant that it wasn’t because I was too old! It could have been though, because from what I heard the other day I could have had it for 20 years without being diagnosed so age doesn’t really come into it. So glad your partner got treated when he did, I know it’s been tough for him since xx
      I was with my father-in-law when he died, I was taking him back for his appointment. I’ve since discovered that my biggest attacks happen when I am stressed or distressed. So it makes sense that I ended up in hospital just two days later. Graham had so much to deal with 🙁 xx

  2. Kim Carberry

    You know our story about my girls hearts. It was discovered the day after Ellie was born by a trainee doctor but the elder one brushed it off until she broke her fingers, there was chest infections and the excessive sweating which were all signs. Even when Ellie was diagnosed and Becky had been checked by the specialist we had to go back to our GP for an official referral who said I was overreacting as there was nothing wrong with Becky’s heart. She was proved wrong. It is a sad shame that people do slip through the net. It shouldn’t happen but does.

    I feel so sad for you that the signs were there but never recognised. Sending hugs xx

  3. Sally

    It’s so difficult isn’t it? WE know the NHS is stressed and full of people doing their best, but it’s so frustrating when its our loved ones being passed from pillar to post and having to live with uncertainty. Scary post.

  4. Debbie

    Hi Anne, it sounds like a frustrating system. I must admit that even though we’ve had our fair share of issues regarding getting a diagnosis for Gregs (it took years) and that his muscle condition doesn’t have a name (personally I think it’s linked to his autism) I do think the Doctors here (in Greece) are thorough (for the most part). The health care system here may be struggling for equipment and Doctors, but complaints are taken seriously. There isn’t a waiting list of weeks for MRIs and CT scans. You walk into the ER and they often stick a drip in your arm right away and give you a whole array of tests to be sure… When my Dad had prostate cancer a few years back it was in such early stages that the MRI couldn’t pick it up, but the doctor knew from the blood test that things weren’t right and persevered until bad cells showed up… I’ve never seen my Dad look as ill as he did when he came out of the MRI and he went in looking good!… It’s tiring when people are ill and still have to fight for a diagnosis. It should never be. And I agree that people have to not give up looking for answers as much as they feel they want to.


  5. Justin

    The NHS is one of our greatest assets in this country, but you’re right it is in a bit of a state, severely stretched and staff that work too hard with little rest. I really hope something gets sorted soon, but I’m not holding my breath, as has already been said, it will probably get worse before it gets better.

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