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How long did you wait before seeing an ME/CFS specialist?

Discussion in 'General ME/CFS Discussion' started by bspg, Jul 25, 2017.

  1. bspg

    bspg Plant Queen

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    I'm just curious.

    I believe my onset was gradual but things significantly declined in early 2015. I saw Dr. Kaufman this year, so I consider my time waited to be ~2 years.
     
  2. halcyon

    halcyon Senior Member

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    Saw Dr. Chia about a year after onset (wait time for first appointment was like 6 months), then saw a Montoya PA at Stanford after about a year and a half (1 year wait time).
     
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  3. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I'm in the den of ignorance called the UK, so it was 4 years after after a suicide attempt that I finally squeezed a diagnosis out of my GP, and another 9 years before I saw a specialist, who didn't recommend anything I wasn't already doing.
     
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  4. trishrhymes

    trishrhymes Senior Member

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    Diagnosed by GP in UK 27 years ago after 6 months post viral fatigue.

    The only time I've ever seen any consultant was after 14 years of relatively mild illness I finally had to give up work and was sent to see a semi-retired rheumatologist paid for privately by my employer for a report for my ill health retirement pension. He just confirmed the diagnosis on case history and symptoms, and didn't suggest any treatments.

    The local 'ME specialist service' had a GP to assess patients who, when I saw him about 6 years ago, was completely clueless. At least at that stage they were recommending pacing, not CBT or GET at that clinic - I've heard it's gone off the rails since.

    I'm not well enough to travel anywhere else to see a specialist.

    So I guess my answer to your question is 27 years and still waiting!
     
    Last edited: Jul 25, 2017
  5. Countrygirl

    Countrygirl Senior Member

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    For me it 15 years after becoming ill, four years after becoming severe. I was 'rescued' by a friend who took me out of the county to a doctor a couple of hundred miles away who admitted me into a nursing home. where I was diagnosed. I was told it was a chronic Coxsackie B infection and I was diagnosed according to the Ramsey guidelines. At that time, a muscle biopsy was taken from the thigh (no anaesthetic given then ) to confirm diagnosis.

    47 years after becoming ill, I am still waiting for local doctors to recognise the reality of ME.
     
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  6. bspg

    bspg Plant Queen

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  7. Webdog

    Webdog Senior Member

    38 years after becoming ill. 1 year after diagnosis.
     
    Last edited: Jul 25, 2017
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  8. Wishful

    Wishful Senior Member

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    I haven't yet bothered to try to see an ME/CFS specialist, because as far as I know, there's no point. What good is a piece of paper officially stating that a doctor has judged that I probably have the disorder? I'm waiting for a treatment that requires an official clinical diagnosis.
     
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  9. Invisible Woman

    Invisible Woman Senior Member

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    I do see your point @Wishful. The trouble is that if you need support from the state by way of benefits or social services then you need a diagnosis and input from your GP or specialist.

    From that point of view many patients are doubly damned.
     
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  10. Mij

    Mij Senior Member

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    I was fortunate to live in a city that had an M.E specialist so saw him 1 year after sudden viral onset. It was after a relapse that I knew something was wrong so went to him to investigate.
     
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  11. valentinelynx

    valentinelynx Senior Member

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    It was about 4 years after my sudden onset of illness before I saw Jay Goldstein in 1996 or '97 (don't recall very well). I waited until the illness was interfering with my ability to complete medical school. I heard about Dr. Goldstein through a friend who had been ill since the mid-70s. After Goldstein "retired" in 2001, I did not see another specific ME/CFS expert until 2015 when I began to see Dr. Kaufman. In the meantime I saw physicians simply to be maintained on my pain management regimen. Starting in 2011, I began to pursue the Lyme/Bartonella possibility. Dr. Kaufman covers both the ME and the infectious sides of this illness.
     
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  12. Revel

    Revel Senior Member

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    It took 40 years post-onset for a GP to grudgingly confirm that I had ME. I needed an "official" diagnosis at this stage because I was no longer able to work. That was over 4 years ago and I haven't been referred on elsewhere. So, coming up for 45 years and still waiting . . . patience is beginning to wear thin :meh:.
     
    Last edited: Jul 29, 2017
  13. bspg

    bspg Plant Queen

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    @Revel That is a very long time to be sick. I'm sorry you've had to endure this disease for so many years. :hug:
     
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  14. msf

    msf Senior Member

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    I saw KDM when I had been ill for 5 months, so before I could be officially diagnosed with ME, but since my father also had it I thought I would take the chance, and unfortunately I wasn´t being a hypochondriac.
     
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  15. Kenny Banya

    Kenny Banya Senior Member

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    24 years, because it was mild.
    Modafanil, ironically a drug used for daytime wakefulness, was the very quick catalyst (1 day) to make it moderate & get the diagnosis last year.
     
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  16. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    31 years and counting. I live in a rural area a long way from any specialists. I cannot afford all of the expenses that would be involved. I am also single, so cannot do any treatment that would render me unable to care for myself. Unfortunately, many of the ME/CFS treatments make you worse before they make you better.
     
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  17. edawg81

    edawg81 Senior Member

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    8 weeks after my acute onset that pushed me from very mild to very moderate (thanks facebook group ppl for urging me to see an ME specialist!). I was very mild for 10 years before but didnt know what was wrong and neither did any doctor.
     
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