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How did you finally get diagnosed?

Discussion in 'General ME/CFS Discussion' started by JBoneske, Apr 12, 2018.

  1. JBoneske

    JBoneske

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    And before you did, what did you think was happening?
     
  2. jpcv

    jpcv Senior Member

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    I diagnosed myself, after spending one year going to diferent health professionals- I´m a doctor, too.
    I remembered that once , while reading a medical journal, I saw the words "Chronic fatigue Syndrome" .
    So I decided to learn something about it, when I read the canadian criteria, and more specifically, the definition of PEM, I knew that was the diagnosis.

    Before that I thoght that I had overtraining syndrome because I was doing lots of activities: swimming, surfing, lifting weights.
     
  3. Seven (formerly lnester7)

    Seven (formerly lnester7) Seven

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    After 5 years of being bounced between doctors my PEM became more clear so I autodiagnosed myslef ( I was progressive onset) so not as clear at first. So I asked my doctor to refer me to the Klimas clinic, I told him we have nothing to loose at this point an they are the faster to eliminate other things so is a win win. He very reserveredly agreed. Best decision of my live. If you go early on you have a better chance of getting cured. So loosing time on the medical bouncing Is not that good for you.
     
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  4. Wishful

    Wishful Senior Member

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    Self-diagnosis for me too. Getting a real clinical diagnosis would require too much travel and other hassle to be worth doing. I'd have diagnosed ME earlier, but the American criteria for it were confusing, and I thought I could only manage two criteria. When I wondered if there were other criteria, I checked and found that I fit the Canadian and International criteria.

    I still say that 'unrefreshing sleep' implies a sleep disorder rather than a type of fatigue that isn't reduced by sleep.
     
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  5. Sushi

    Sushi Moderation Resource Albuquerque

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    I had been half-ill for decades and just thought I was one of those weak specimens that would have died in childhood in another era. Went from pillar to post with doctors in the earlier years, then gave up even going for a long time. Finally heard of a doctor that might take my symptoms seriously and he diagnosed me about 19 years ago.

    After I got over the "weak specimen" theory, I stumbled across dysautonomia through a chance encounter. I realized that dysautonomia fit but didn't get the fuller picture until I was diagnosed by the detective-type doctor.
     
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  6. maybe some day

    maybe some day Senior Member

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    When I started getting symptoms, I went to a regular PCP. By the 3rd visit he said "you may have cfs, theres no cure, I suggest counseling to help you tbrough it"

    This was early 90's, and with Kaiser. Go figure..the Home Depot of health care diagnosed me.
     
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  7. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I went to the "Home Depot of Health Care" in Washington State in early 1991, Group Health. I had already been sick for several months since Dec 3 1990. When the medical assistant checked me in for my visit, she recorded my symptom list, which was long, and she said, "You have chronic fatigue syndrome, like Cher."

    I didn't discuss that with my doctor then. Instead I went to the library and accessed Medline (Medlars?) to find the Fukuda list of symptoms. I printed it and took it to my next visit (mid-1991) with my regular PCP and he agreed with the diagnosis of CFS.

    Just to be on the safe side, especially with long-term disability insurer, I visited a GP outside of Group Health who advertised himself as "Holistic." I think I also made sure he was familiar with CFS by speaking with his office staff. He gave me a B12 shot and also taught me how to give myself B12 shots. Several years later he joined Group Health but he wasn't that helpful to me, other than prescribing B12 shots, but missing low ferritin, even though he ordered the ferritin test.

    By the way, Group Health of Washington is now Kaiser.:(
     
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  8. JBoneske

    JBoneske

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    You can actually be 100% cured? Are you cured?
    I’ve been on a year of eliminating everything. Nothing left really but MS. Should know that this week.
    It’s gotta be CFS/ME because symptom wise it totally lines up and theres no other reason really for getting so sick after being so healthy.
    So are you officially diagnosed by a dr too?
    I think I need to get diagnosed soon so I can retire and also have a source of income. I’m absolutely not lazy but I am very sick and tired and need to shit it down. If I can recover that would be an unbelievable gift.
     
  9. maybe some day

    maybe some day Senior Member

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    Cured? More like remission. Ive heard of folks nearly symptom free, only to have their lives slashed again with relapsing. It never leaves, it lurks.

    I am one of them.

    Glad your doing better, but just be careful of your health
     
    Last edited: Apr 15, 2018
  10. Seven (formerly lnester7)

    Seven (formerly lnester7) Seven

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    The Cfs doctor say some do get cured if in treatment early ( before 5 years). Have a better chance. Is not a high percentage I can’t remember but was very low. But if you have a chance at cure is early on. I do know a few plp that did get better after long time ( all w different approaches)
     
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  11. Sundancer

    Sundancer Senior Member

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    I've no official diagnosis and don't yearn for it either. if that is put in my dossier every doc I'll see in the future will regard me as a nutcase.

    third time bedbound, first two times remission.
    Ticked off on the international concensus criteria,
    last time I could tick all the boxes.
    first time I conformed to the pediatric criteria

    Visits to hospitals will only get me severe PEM, so I won't. They've no help for me so I feel no need to go there.
     
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  12. hangininthere

    hangininthere

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    From age 18 when I got CFS in 1971, until sometime in my mid-30's, I just figured I had untreated depression.

    The rare times I went to family docs for something simple , I would mention how tired I was all the time. Mainstream blood work always tested normal, so that was that.

    Then at the library in my mid-30's, I saw a book propped up on the New Books display titled something like 'Chronic Fatigue Syndrome'. Grabbed up the book, read it voraciously, and voila, I knew what I had.

    I didn't seek a formal diagnosis until around 1995 at age 43 when I heard of a rheumatologist who knew about CFS. I went to him and got an official diagnosis.

    Patti
     
    Last edited: Apr 19, 2018
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  13. JBoneske

    JBoneske

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    It’s pretty hard not to be depressed when you’re that tired and your life slips away for no reason that you can do anything about. I’m pretty sure depression can’t make you feel that run down and lifeless either.
    Depression is a symptom not a cause.
     
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  14. JBoneske

    JBoneske

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    I have one more test I believe in numerology(EEG). Not sure what that can find. Looks like I’m out of possible things that I could have beat.
    Made an appointment with my GP for next Friday. I sent him a message that I needed to get this wrapped up. Told him I can’t think of anything else that needs to be ruled out. I suggested ME/CFS as the only thing I can think of..
    Wish I coulda had a normal disease no matter how bad that is understood and accepted by the world.
     
  15. hangininthere

    hangininthere

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    Yes, Chronic Fatigue Syndrome is a whole other beast.

    Patti
     
  16. ahmo

    ahmo Senior Member

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    No help from the few MDs I saw. DIY diagnosis once I finally discovered ME literature. Similarly, I discovered GAPS diet by chance, a life changing piece of the puzzle (starting w/ no gluten, dairy). From there, following suggestions on GAPS forum, uncovered MTHFR problems. The whole process has been up to my online research.
     
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  17. CCC

    CCC Senior Member

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    We had a different path. Diagnosed by a Sydney-based specialist within months - a gut parasite and minor zinc issues were identified as the probable cause, but not effectively treated at the time.

    All the rest, treatments included, have been self-diagnosis. A local GP will request tests as needed.

    So thanks to PR, our quality of life is amazingly better.
     
    Mel9 likes this.

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