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Is the “Cry Wolf” Disease Getting in the Way of an Unrelated Diagnosis?

Discussion in 'General Symptoms' started by AngelM, Sep 24, 2018.

  1. AngelM

    AngelM Senior Member

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    I worry that since, according to most doctors, CFS is a “Cry Wolf” disease, it is making it more difficult to get to the bottom of what I believe is an unrelated problem. Once a doctor has pronounced that your CFS symptoms are “imagined,” he or she will invariably think you are making up any additional symptoms you might present with. I’ve been feeling ill over the past few weeks, but because the symptoms began as rather a non-specific sore throat and headache, I assumed I was experiencing a worsening of CFS. After a visit to my PCP— who doesn’t believe in CFS—I was told he could find nothing but a slightly enlarged lymph node. So I must be imagining my symptoms. Right? But as days have gone by, the pain has become concentrated in my head, and behind my eyes, and it appears to me (from experience) that this is very likely a severe sinus infection.

    I went through someting similar twenty years ago, made multiple trips to a doctor who insisted I was having migraines. Since I’d never experienced migraine or any headaches before, I thought his diagnosis was highly unlikely. Besides my intuition told me there was something else going on. It felt like my sinuses were involved. However, the doctor refused to believe me, showed me in-office lab results that he said proved I did not have a sinus infection, and continued to treat me for migraine. Finally, much to the consternation of my primary doctor, I went to an otolaryngologist, who ran a needle into my sinus cavities and came back with pus—an obvious sign of infection. Actually two infections—staph and pseudomonas, and neither responded to antibiotics. In fact, the kind of antibiotics I had been given by my primary doctor had only made the infection worse by killing some of the bacteria and allowing the staph and pseudomonas to grow more antibiotic resistant. Because the infection was in the sphenoid sinus, located between the eye and brain, there was a clear danger that I could develop meningitis. The only option was an emergency sphenoidectomy. It was a miserable experience but, because of it, I clearly recognize the symptoms of a simmering sinus infection.

    I just received an email message from my doctor’s nurse stating that after reading the lab results from a week ago, he could find no evidence that I was ill. This feels like deja vu. With one big difference. In 1998, I was able to see an otolaryngologist by simply calling and making an appointment. Today, it is impossible (at least in my state, which BTW ranks 49th in healthcare) to see a specialist without first getting a referral from a PCP, then going through a central referral service. It usually takes weeks or months—if it happens at all.

    The idea of going through a repeat of twenty years ago, is unbearable. So what can I do? I am feeling worse every day. But I can’t prove I have a sinus infection. The otolaryngologist I established with twenty years ago is retired. So do I call and beg to get in to see another without a referral? Urgent Care. Emergency Room? I am honestly at a loss.
     
    Last edited: Sep 24, 2018
  2. Wolfcub

    Wolfcub Senior Member

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    Nowadays, the more I hear, the more convinced I am that doctors might be getting stupider.

    I don't know if you have this option, but one good thing about the UK NHS system is anyone can at any time change clinics/"surgeries"/GPs (PCPs)
    And with a whole new doctor the first thing to say would be "I have recently developed a sinus infection that may need antibiotics." Let him find out the CFS part after he's treated the sinuses!

    Sinus infections actually do present with clear (ish) symptoms a lot of the time. WE don't even need to go to med. school to know that.
     
    Last edited: Sep 24, 2018
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  3. Shoshana

    Shoshana Northern USA

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    @AngelM
    We have the same difficulties, here too. It is very upsetting and frustrating.
    I am so sorry about what you described! I don't know what to suggest, other than if its possible for you to switch GP's, as Wolfcub suggested. That is not usually easy, either.

    And not always possible, but is seems like you need and deserve a different one.

    Or, to call multiple ENT offices, to see if yo ucan find any who would see you directly, without referral?
     
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  4. taniaaust1

    taniaaust1 Senior Member

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    sorry to hear of your issue Angel. The best thing I think you can do with yourself if you have a doctor who doesnt believe you when you tell him you are sick is to find yourself a better dr. It may be just issues with your sinuses now but it may be something very serious he dismisses in the future eg cancer cause of his views of people with ME/CFS do not have real symptoms.

    Calling and begging places to let you in without a referal is almost sure to be a waste of your energy as you wont get to speak to he actual doctors but the ones who main the phones and they wont go and breach rules if a referal is needed.

    Where I am if I was in your shoes, I'd be trying to find another GP and if that isnt an option I'd be going to the hospital to try to get the referal (though it probably make them mad as its something one should get from ones normal GP)

    best luck
     
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  5. Wolfcub

    Wolfcub Senior Member

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    We are lucky here because we can literally walk into a "surgery" (medical centre) and tell desk staff we would like to register with one of the doctors there.
    Then they give you a form and you fill it in, and give the name and place of your last GP. It doesn't matter if that last GP was just around the corner.
    Then of course you have to follow the protocols for making an appointment according to that clinic. Sometimes some clinics will make you one the same day....(rarer nowadays but can happen.)

    Are there any "drop-in clinics" in your area, @AngelM ?

    People have turned up at ER for less......(just an idea) In which case it may be just a few hours to wait to see an ENT and get antibiotics....
     
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  6. jesse's mom

    jesse's mom Senior Member

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    My daughter was running fever with swollen glands and enlarged lymph nodes five years ago.
    Her pediatrician when I called the office said to wait it out, as her fever was not very high for a child.
    She said treat it with tylenol and call in a week of she was not better... dismissed.

    She is not a complainer. I took her to urgent care the next day. They have an in office lab, the Dr was kind. He did a tiny needle prick, guess what? Mononucleosis... I saw my first symptoms in her illness of the same thing from when I had it. She was kindly excused from school for two weeks.

    When I called my GP last fall they didn't even call me back. I had a temp of 104F again...
    I want to urgent care and they immediately tested me for the flu. in ten minutes I was given a positive result of Flu type A.

    IN the next two days with treated with antibiotics and tamiflu.. I was not treated fast enough, I almost died! I was in the ER and admitted as inpatient for 11 days. My internet said they were not convinced of the lab results because they "didn't trust the lab at urgent care".

    At my follow up visit I was dismissed as a patient from my GP's practice saying that I did not have current bloodwork and it seems to me that they did not want a malpractice suit.


    The moral of my story is that YOU know your body. I have gotten better care in cases of viral infections from urgent care.

    If you even think it is staph, please consider my story. :cry::cry::cry::cry: I am not a doctor.
    I really hope you get an answer and feel better soon.

    :hug:
     
  7. Shoshana

    Shoshana Northern USA

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    A week?! :jaw-drop::mad:
    :cry:

    The things we go through! :(:aghhh::cry:
     
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  8. jesse's mom

    jesse's mom Senior Member

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    "Cry wolf" disease is a great name for this thread!
    simple profiling... I tried for a diagnosis of ME for almost a year. now I just let the numbers and the symptom list talk for me.

    When in doubt I go to urgent care.
     
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  9. AngelM

    AngelM Senior Member

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    Thanks to all for your thoughtful responses and suggestions. I decided to go to Urgent Care because it is two blocks away. The doctor there gave me a prescription for an antibiotic. He said my symptoms and my history were consistent with a sinus infection. He wants to see me again in 48 hours. I left out any mention of CFS. Learned my lesson.

    I also decided to try a saline lavage method I think I found in YouTube several years ago. I learned the original recipe for nasal saline twenty years ago when I had a sphenoidectimy. This was long before Navage and Neti Pots hit the market. You simply use an infant ear syringe and homemade saline. Put your head back and squirt the solution into one nostril until it runs out the other, then switch nostrils and do the same. It really does work. The hardest part is getting past the gagging reflex—but it only takes a couple of tries.

    The method I learned on YouTube is a bit different from the otolaryngologist’s method. You squeeze the saline into your nostrils with the bulb syringe, then you pinch your nostrils shut, and hang your head down toward your legs as far as you can—as if you were gettinv ready to stand on your head. Then hold the position for as long as you can so the solution will all your sinuses, including your sphenoid, which is almost impossible to get to with other methods. I’ve done the “stand on your head” method three times today, and I truly believe doing it has made a huge difference. I felt almost immediate relief. This method is also recommended for ear aches and getting rid of that miserable “underwater” feeling you sometimes have in your ears that seriously affects your hearing.

    Most people I have recommended this method to
    try it once, gag on the saline and never try it again. Which is a shame because, after a few attempts, you learn how to close off your epiglottis, and the gagging disappears. It is much like how you put your head under water without drowning. I was told twenty years ago by my great otolaryngologist that you can stop a sinus infection in its tracks (and avoid antibiotics) with five cents worth of Kosher salt, baking soda, and distilled water. I am certain he is right. Wanted to pass this info on because frequent sinus infections is a common symptom of CFS.
     
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  10. Judee

    Judee Senior Member

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    I'm so glad you went to Urgent care and got the help you needed. :)
     
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  11. jesse's mom

    jesse's mom Senior Member

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    Oh! me too!!!
    Good going @AngelM !
    You might consider making this post into a blog on this forum.
    The part about how to clear the sinus with the saline.
    I do think it is blog worthy!:hug:
     
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  12. Learner1

    Learner1 Forum Support Assistant

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    @AngelM. Good for you for being persistent!! I have found one gets a lot more help if ME/CFS isn't mentioned, as there are no treatments for it anyway... However, it is very possible to find a boatload of other diagnoses if doctors will only bother to look...

    As for the saline sinus rinse, I found adding manuka honey to be helpful to add - it has antibacterial and antifungal properties.
     
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  13. Wolfcub

    Wolfcub Senior Member

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    I'm really glad to hear you got sorted out with that @AngelM

    It goes to show...urgent care have no preconceived ideas, they just treat you in a straightforward way. It shows to me how unbalanced and prejudiced some doctors are capable of being and how it is affecting their level of care!

    All the best and hope you are feeling better soon!
     
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  14. ukxmrv

    ukxmrv Senior Member

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    I've been using a machine like this one

    http://www.hydromedonline.com/hp_landing.html

    as the " gentler methods " were great in the short term but in the long term they kept coming back quickly and with a vengeance.

    Agree completely about the "cry wolf". I went for years with recurrent sinus infections and my UK GP refused to refer me to a ENT (ear, nose and throat consultant). By the time I got there it had eaten through my sinus area and was dangerous.
     
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  15. debored13

    debored13 Senior Member

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    been looking into manuka honey because of it's high methylgloxal content (a controversial chemical); but it seems expensive to actually get the stuff with guaranteed methylgloxal content
     

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