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Known cases of CFS misdiagnosis.

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Snow Leopard, Nov 9, 2010.

  1. Snow Leopard

    Snow Leopard Senior Member

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    While anecdotal, it might be interesting to discuss cases of people we know who were initially diagnosed with CFS when their disease turned out to be something else.

    I'll start:

    Coeliac Disease
    Heart defect - Tetralogy of Fallot (surgery solved the problem - surgery was also done at birth, but this must have been insufficient later in life)
    HIV/AIDS (well according to my local GP)
     
  2. rlc

    rlc Senior Member

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    hi snow leopard i know of four cases of people misdiagnosed with CFS, which turned out to be hemochromatosis.
    one misdiagnosed with CFS that turned out to be polycystic ovary syndrome.
    and another one which turned out to be addison's disease.
    And i've heard of from other sources of endless cases of CFS misdiagnosis with things like Coeliacs, B12 deficiency, Vitamin D deficiency, adrenal insufficiency, thyroid problems, pre diabeties, diabeties, sleep apneia etc, The unfortunate truth is that alot of people who get this diagnosis never get investigated properly for other conditions, and doctors mess up all the time no matter what their investigating Studies of autopsies have shown that doctors seriously misdiagnose fatal illnesses about 20 percent of the time. So millions of patients are being treated for the wrong disease. read this article it's scary stuff link http://www.nytimes.com/2006/02/22/business/22leonhardt.html?_r=1 All the best
     
  3. Sean

    Sean Senior Member

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    I think Gilda Radner, the late US comedian, was diagnosed with CFS but it turned out to be ovarian cancer, and it killed her.
     
  4. Glynis Steele

    Glynis Steele Senior Member

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  5. George

    George waitin' fer rabbits

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    So does this account for the other 20% of testee's (give or take) that don't have XMRV????
     
  6. caledonia

    caledonia

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    If it was, it would mean that Fukuda + CCC is a fairly inaccurate way to diagnose CFS.
     
  7. George

    George waitin' fer rabbits

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    Now that would be interesting! If folks are getting diagnosed with CFS who have celiac or hormone problems I have a couple of questions please.

    1st - is this because the Fukuda criteria only is being used by doctors?
    2nd - is this because no criteria is being used by doctors they are just tossing people in that they don't like?
    3rd - is this a function of lazy doctors, too much time, not enough money, slap em with CFS and then ignore them??
    4th - if this is a function of lazy doctors would new attention to the illness get people properly diagnosed or would the same problemm hold?
    5th - aren't all these things suppose to be ruled out before a CFS diagnosis???
    6th - if these things are not ruled out before CFS diagnosis are the doctors liable????
    7th - lastly (big grins and thank you all for being so patient with me) Can ME/CFS exisit as a co condition with any or all of these illness??

    Thanks guys.
     
  8. rlc

    rlc Senior Member

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    hi george good post do my best to answear your questions
    1st no matter which of the criteria doctors use they are all hopelessly incomplete, as an example none of them included Vitamin D deficiency which effects hundreds of millions of people world wide. here's a list of other things that might cause CFS symtoms http://www.wrongdiagnosis.com/c/chronic_fatigue_syndrome/misdiag.htm
    2nd often yes no criteria is being used, alot of doctors think CFS means mental health problem and don't check for other causes, or think that nothing will show on tests for CFS so don't bother testing, and even good CFS doctors are often so busy trying to find treatments for CFS,that they overlook other causes.
    3rd YES
    4th i think it would take a world wide media campaign to raise the awareness of misdiagnosis in CFS, before anything changes.
    5th YES but good luck finding someone who has had them all ruled out before they got diagnosed with CfS
    6th YES and if people find out they have been misdiagnosed, in most countries in the world they can get large amounts of finacial compensation for their suffering
    7th YES and they'd feel alot better if the other conditions got treated properly.
     
  9. CBS

    CBS Senior Member

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    License to stop looking?

    A friend's sister was recently diagnosed with MS (demylenation, etc.) after having been diagnosed as having CFS for five years.

    When I was first diagnosed as having CFS I refused to accept that diagnosis. At the time I was conducting research in the health care field and I knew that for most physicians the CFS diagnosis was license to stop looking any further.
     
  10. George

    George waitin' fer rabbits

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    Great reply's rlc. How do others feel about the answers or questions????

    CBS (squeals of doggy delight!) I was the same way when I first got the label, even switched doctors to try and shake it. I'm thinking that if/when the new NIH website goes up and if/when there is a different case definition/testing recommendations that I may have to switch doctors yet again. I'm currently balanced on the horns of dilemma, educate the current idiot or go find a new idiot and educate him/her. It's going to take a while for the new and improved ME/CFS to trickle down to the doctors. And I'm concerned that the quacks will come out of the woodwork to take advantage during the interim until treatment protocols are in place.

    But the point of the thread I think was to talk about all those who have misdiagnosed with CFS who have other things. Won't a change in the state of play put pressure on doctors to reexamine patients who either don't fit the criteria that they haven't been using? (grins) And quickly too if they have put themselves in a place where they can be sued.

    I'm hoping that will be the case any way. What do you guys think?
     
  11. CBS

    CBS Senior Member

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    The person who would really be in a position to give an interesting response to the original question posed in this thread is Dr. Bateman. She has stated in previous presentations that she had patients she recognizes as not being typical CFS patients and that on occasion (how many?) the CFS diagnosis was proven wrong.

    Dr. Bateman is giving a CFIDS Assoc. webinar tomorrow entitled "COMMUNICATING WITH YOUR HEALTH CARE TEAM ABOUT CFS."

    Perhaps a question is in order about the diagnosis of CFS itself and how to balance the need to keep an open mind versus chasing endless hunches to the point of exhaustion.
     
  12. CBS

    CBS Senior Member

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    I think that far too many doctors (and scientists and relatives) are under the impression that they've heard all they want to hear and that they know what CFS is. That said, my present primary care provider is wonderful (I fired several (dozen?) doctors to get to him, some of whom nearly killed me, and I would have fired my present doctor if I didn't think the world of him). Actually, I have a great team of doctors but I also have a growing list of life threatening complications (that is impossible to simply dismiss) that brought them together.

    There was a time not so long ago when I never used the term CFS with any of my specialists. I had no way of knowing how they were interpreting the term and what other connotations they were throwing into the mix. I had had too many bad experiences in the past and if CFS is short hand for something, I needed to know what that something was. If you can swing it (and I know that it is an impossibility for most), I think that getting all of your docs on the same page is one of the most compelling reasons to see a CFS specialist (Klimas, Bateman, Montoya, Peterson, Kogelnik, Lerner, etc.). Thanks to a very detailed letter sent out by Dr. Montoya, all of my docs and I can now use CFS as short hand in a productive manner where the message received is the message that was sent.
     
  13. George

    George waitin' fer rabbits

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    Gads, a couple of dozen! eeek, I've only fired four so far. (grins) guess I have a long way to go to reach the national average. (big grins)
     
  14. floydguy

    floydguy Senior Member

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  15. George

    George waitin' fer rabbits

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    Thus showing that the doctor had no ideal what CFS was! That would look more like arthritis or fibromyalgia. Do a lot of doctors think Fibro/CFS is all one thing???
     
  16. floydguy

    floydguy Senior Member

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    I think the problem is that fatigue can come first and THEN back pain with other widespread pain. As we know, CFS can be a wastebasket diagnosis, so until the disease progressed to the point they could determine what it was CFS was the diagnosis. They also had HHV-6 and very, very high inflammation levels. I don't know this for sure but I think that person also had Lyme Disease.
     
  17. Cloud

    Cloud Guest

    I've heard all kinds of misdiagnosis stories via internet forums, but the only person I know personally that I speak with face to face who had a misdiagnosis of CFS (for 8 years), actually had Lyme. Many believe an overlap exists between CFS and Lyme....but she has remained 90% recovered x 3 years now, after a year of ABX...I would call that strictly Lyme. She did not have ME/CFS and would not of had to endure 8 years of severe illness had she been adequately diagnosed sooner.

    I have Celiac disease, but I also have ME/CFS. Sometimes it's co-morbid rather than a misdiagnosis.
     
  18. dannybex

    dannybex Senior Member

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    I would agree that some of these are misdiagnosis, but things like vitamin d and b12 deficiencies can often be contributing co-factors in causing CFS or at least worsening the illness. The exception of course would be if the patient is brought back to complete health when "d" or "b12" levels are repleted.
     
  19. Wayne

    Wayne Senior Member

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    Candidiasis - Parasites - Focal Infections

    Candidiasis -- I have an acquaintance who was diagnosed with CFS, and eventually learned he had systemic candidiasis (candida overgrowth). He was middle-aged at the time was actually making preparations to die he was so ill. He tried to convince me I could get well if only I treated my candida.

    Parasites -- Some parasite infections can be extremely debilitating and resemble ME/CFS. I read what I thought was a very credible article by a woman who suffered tremendously for two years, and was able to recover once she addressed her parasite infection. Conventional medicine seems to be pretty oblivious to these kinds of things, and laboratory testing is often inaccurate.

    Focal Infections -- I've read many stories of people tracking down focal infections (primarily root canals), and recovering once they were able to adequately address them. See a thread I started entitled, "Diagnosis Unknown - Story of CFS Recovery" for more information.

    Also, I ran into an interesting story recently about a woman who feels her restricted airways caused her oxygen deprivation for decades and was a primary factor in her CFS. See this thread entitled, "Oral Systemic Balance" for more information and her comments on her recent health improvements.

    I think this is an important thread. Should be required reading for every health care practitioner in the world. If only I could make things happen by decree! :D

    Best, Wayne
     
  20. Stone

    Stone Senior Member

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    My eldest sister had CFS for years before I got sick. When I came down with it, she kept telling me it was CFS, but I was in the medical profession and had long since concluded that she was neurotic since all she ever did was complain about how bad she felt, and how no one understood how sick she really was blah, blah, blah. I totally ignored her illness for all those years and I was really annoyed that now she kept insisting that my very real, very serious and very frightening symptoms were the same as her imaginary illness.

    Then at one point after having every test in the book all come up negative, my boyfriend at the time (an ophthalmologist I had been dating for years) very cautiously and gingerly said to me, "Ya know, there is one thing that could be doing this to you, and it's really the only thing that fits now." "What's that?", I asked, wondering why in God's name he hadn't mentioned it before. He hesitated for a moment and then took the plunge, "Chronic Fatigue Syndrome"

    And just as he figured I would, I flipped! I almost slapped the poor guy and replied while practically foaming at the mouth, "You SOB! Can't you see I'm sick here? What's the matter with you? How DARE you say such a thing you insensitive #%&*@!...." and that was just the warm up. Turns out he was right, and my sister was right. Yup, I had a little egg on my face on that one. Glad they were able to forgive me. :ashamed:

    Some years later when our middle sister also got sick, she had her elder and younger sisters both trying to convince her that she had our disease and she needn't continue to subject herself to the futility, expense, discomfort and emotional anguish of consulting still more doctors and undergoing still more testing, just to get still more 'normal' results. Naturally, her response to us was often something along the lines of, "Geez! you know what think? I think one of the symptoms of having Chronic Fatigue Syndrome is thinking everybody else has it too!" Of course we completely understood her reaction.

    Most fortunately, the Internet had become a part of everyday life by this time, so it didn't take her long to figure it out for herself and realize what was happening to her, and to finally understand what her sisters had been going through as well.
     

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