Who feels that doctors dont do enough

Discussion in 'Fibromyalgia Main Forum' started by kinkypinky23, May 19, 2003.

  1. kinkypinky23

    kinkypinky23 New Member

    I think that when you have FM and CFS doctors dont appear to take you seriously, or they think every ache and pain is related to your condition. But not necessarily even if you dont have CFS and FM they make mistakes.

    18 month old baby dies after being discharged from hospital from Meningitis that the medical staff claimed he never had.

    28 year old women on her wedding day dies of a PE. Doctors claimed she wasnt a high enough risk for them to do appropriate tests.

    My friend kezza who dies of PE after a VQ scan was performed whick ruled her out as a PE case. Later dies of pE because they never bothered to do a scan of her veins.

    I think some of the methods of diagnoses are very dodgy indeed.
  2. tansy

    tansy New Member

    I survived a PE because I was then young, healthy and athletic. If someone like that is grey with blue lips and breathless doctors act. Wouldn't want to have to rely on such a response these days.

    Since CFS, and hospital blunders, having problems getting some disabling effects looked into. Not helped by being effectively blocked by local hospital trusts and UK s Department of Health's current guidelines on NHS hospital waiting lists.

    It's a year since my GP tried to refer me to two specialists, since then only my eyes have been checked.

    My son's illness years ago was dismissed purely because he had a disabled mother, apparently this happens all the time. Delays in his treatments have left him with permanent damage particularly to his lungs.

    Sadly this is an all too familiar scenario.

    Bet you get loads more posts on this matter.

    Cheers

    Tansy
  3. j9miller

    j9miller New Member

    I agree with what you said. All too often, not always, we as FM and CF sufferers are told that "that symptom is related to your illness" and we are sent on our way. I believe drs as well as friends and family (maybe even we ourselves) become complacent to these illness'. We get used to feeling like garbage all the time that we chalk everything up to it. It has become sad. And many are paying the price.
    In August 2000 I was taken by ambulance to the ER because I could not walk. The pain in my back into my legs was HORRIBLE. When I was finally seen (after 12 plus hours waiting)and the ER dr learned that I had FM and the x-ray showed nothing he told me to go home and call my primary in the morning. I started to cry and told him I could not stand up or walk. He called my primary, who was out of town, his fill in, thank the Lord, was old school and had me admitted. After an MRI was done 3 days later they found I had ruptured 3 discs in my lower back and if I had walked I could have permanently injured my spine.
    We must all be our own health advocate and demand better treatment, more treatment, more attention. I am guilty of not standing firm when I believe I need something looked into further but I am trying to get better at it.
    I am sorry for those who have lost their battle and I pray for their families left behind.

    Janine
  4. kinkypinky23

    kinkypinky23 New Member

    before my friends death, her family put her illness down to hypochondria and didnt believe she was seriously ill. the day that she died, she would have survived if her partner had taken her into hospital when she asked instead of saying that there is nothing wrong.

    It is unfortunate with this illness that no one takes u seriously.

    kink
  5. Mikie

    Mikie Moderator

    I have the inscription for my tombstone:

    "I Told Ya I Was Sick!"

    I'm not making fun of a serious topic, but humor does help us.

    In some cases, docs run way more tests than necessary just because they fear malpractice suits and they are subscribing to the old CYA method of practicing medicine.

    I truly believe that docs today are so busy that they just don't have time to connect the dots. Either that, or they don't teach them to connect the dots in medical school That said, there are some wonderful docs out there (and here).

    Love, Mikie
  6. Princessraye

    Princessraye New Member

    I have no problem with a Dr. saying that they cannot help me if they feel they can't.
    But no one deserves to be treated badly just because the Dr. or medical science does not know what to do to help a person.
  7. IndigoSC

    IndigoSC New Member

    First, let me just ask what PE is..? Sorry, I'm blond and don't have a clue.
    Well, I know this isn't very important or wasn't very serious, but I was told once I was just having more fibro symptoms, and turned out I had mono and pnemonia. Even though they something you really die of, it would have been a lot more helpful if they had done tests to begin with and not assume that my mono was just a cold and that the pnemonia was just fibro symptoms... I did get down to 88 lbs when I had mono and ended up in the hospital for 4 days on IVs and stuff and had tonsils shrunk and cauderized (that was not pleasant..), whereas if they had caught it quicker I don't think I'd have gotten that bad... but I don't know. They still tell me there's not much they can do for mono anwyay. But after all that, that dr. at least never called me a hypochondriac again.
    By the way, I've never had any tests done to rule out things besides fibro...I had a few pressure points tested, but not even all of them, and never had tests for any other things that are like fibro...[This Message was Edited on 05/19/2003]
  8. IndigoSC

    IndigoSC New Member

    Thanks for telling me what PE is....
    You're probably right about if you have to go to the ER, do not tell them you have fibro or else they'll probably tell you you're fine and just having symptoms of that. I don't think that anyone has ever died OF cfs or fibro, but I'd venture to say it's a big possibility of other problems being ignored and un-tested just because you have fibro and cfs, and the other illnesses that are ignored, you CAN die from. I've asked several drs for other tests to be done, but I always get the same answer, "it's just your fibro." Hopefully it is. If not, I'll be very angry if I ever find out otherwise.
  9. tansy

    tansy New Member

    As someone who had a pulmonary embolism 30 years ago, caused by a contraceptive pill that doctors had already been warned not to prescribe, I find the hypercoagulation theory interesting.

    Ironically since developing CFS 20 years ago, following other problems, I became thrombocytopenic. Had virtually no platelets at one time, now they have settled at around 80.

    So whilst people are discussing hypercoagulation and heparin I find myself quite bemused. Having been given ancrod/arvin through a cardiac capheter, heparin, and warfarin I'm not sure I'd want to use these unless I was really certain that they were necessary.

    Being thrombcytopenic means I, and others, have to be aware of certain dangers, many of these are almost certainly relevant to those on blood thinning medications.

    It's one of those many areas of these DDs that needs further research but I doubt that hypercoagulation will be found in everyone.

    Cheers

    Tansy


    [This Message was Edited on 05/19/2003]
  10. kinkypinky23

    kinkypinky23 New Member

    I think your risk can go up for a PE if you are immobile which is quite common with this illness so maybe there is a slightly increased risk.

    illness can also trigger it due to being bedridden

    Nothing to get 2 concerned about though, just keep your legs active.

    kink