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Should i go to Mayo Clinic?

Discussion in 'ME/CFS Doctors' started by jamienoble, Jan 3, 2015.

  1. jamienoble

    jamienoble

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    Hello, im 28 years old from Sweden. I have been sick for perhaps all my life or since i was very young.
    When i became around 14 years old my symptoms became fully developed and has been since then.

    I have had an medical investigation going on for exactly 8 years, pretty much all my tests has been normal.
    The only thing i have had low levels of all these years is cortisol, but i have had an endocrinology investigation and hydro-cortisone doesn't make any difference so it doesn't seem to be related.

    The most remarkable thing about my situation is that im 100% sure that i have a disease that is treatable.
    I was cured 10 years ago when i took Accutane against accne, this lasted for around 6 months.
    And this is also the only thing that is keeping my hope alive..

    I have no idea what kind of disease i have, it feels very hopeless..
    I heard about Mayo Clinic recently and it seems many people travel to that place that is in a similar situation.

    Do you think i should go there? I would need to travel half the globe and spend alot of money but if they are as good as they say they should find whatever is causing my problems.

    I just cant wait for much longer, so many years of my life has just been thrown away already..
     
    *GG* and jeff_w like this.
  2. Sushi

    Sushi Senior Member Albuquerque

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    @jamienoble

    Most of the reports members who have gone to the Mayo clinic are negative. Here is a thread that about it.

    Best wishes,
    Sushi
     
    Mackee, svetoslav80, Wayne and 5 others like this.
  3. jamienoble

    jamienoble

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    Thanks, after reading that im not sure at all about going to Mayo..
    But i don't know what to do instead either, there is nothing similar in Europe i think.
    A place where they can discover whatever undiagnosed thing you have..
     
    Last edited: Jan 3, 2015
    jeff_w likes this.
  4. jeff_w

    jeff_w Senior Member

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    I can relate. I'm young, too.

    If you're prepared to travel half the globe, please go to the Open Medicine Institute (OMI) in Northern California. Dr. Kaufman is a wonderful doctor there and a world class expert on this condition.

    Last June, I was a bedridden near-vegetable who couldn't speak and needed help getting to the toilet. Four months into treatment, I'm now able to talk to people for hours, go out to coffee with friends, and I even enjoyed New Year's Eve with family at Black Angus restaurant for 4.5 hours! I can sit up for 4.5 hours, whereas before treatment, I couldn't sit up for more than a minute. I had to be in a wheelchair at all times when I wasn't lying in bed. I don't need it anymore.

    I'm alive again, and I keep improving.

    I cannot stress enough how important it is to see an expert. You may send me a private message for more information about the Open Medicine Institute.
     
    Last edited: Jan 4, 2015
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  5. minkeygirl

    minkeygirl But I Look So Good.

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    I've never heard of anyone who had a good outcome at the Mayo Clinic. You'd be better off finding a doctor who specializes in some kind of integrative approach. Any main stream medical center imo will have. I idea.
     
    Valentijn likes this.
  6. SickOfSickness

    SickOfSickness Senior Member

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    Valentijn likes this.
  7. Esther12

    Esther12 Senior Member

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    Maybe try some more Accutane?
     
  8. Xhale19991

    Xhale19991

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    I am a patient of Dr. Kaufman as well. I echo everything that Jeff said. He's a terrific doctor and I recommend him highly.

    What symptoms do you have though? Do you know CFS/ME is the diagnosis?
     
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  9. taniaaust1

    taniaaust1 Senior Member

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    I guess Mayo clinic could be helpful if you DONT have ME/CFS....If you do, its quite useless.

    If you have ME/CFS you need to see a specialist in this and they certainly are not at Mayo.
     
    SDSue, Valentijn, jeff_w and 4 others like this.
  10. Sidereal

    Sidereal Senior Member

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    All you'll get at Mayo is a very expensive workup and a psych diagnosis.
     
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  11. taniaaust1

    taniaaust1 Senior Member

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    None of us thou know if she has ME/CFS as she hasnt said enough about herself, her symptoms etc. Maybe she has something else?.

    Expensive work up would be fine if someone had something else and got it finally diagnosed

    ............

    Maybe a better question she could ask is "With (list of symptoms) does it sound like I probably have ME/CFS? " Then we can possibly scream.. dont go anywhere near mayo. lol.
     
    Last edited: Jan 4, 2015
  12. Sidereal

    Sidereal Senior Member

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    The original post states he/she has had 8 years of medical investigations in Sweden which have turned up normal with the exception of low cortisol. To my mind this suggests a disease for which no conventional medical test yet exists, i.e. this constellation of syndromes we refer to as ME/CFS. I don't see how travelling to another continent to spend one's life savings and possibly risk a permanent crash from exertion and abuse that may be meted out at Mayo is a good idea.
     
    SDSue likes this.
  13. taniaaust1

    taniaaust1 Senior Member

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    Good point. I was just wondering why no ME/CFS diagnoses if so many tests were done?

    Is Sweden one of those countries in which they dont believe it exist?

    Being suddenly cured by a vitamin for 6mths, is rather strange for a ME/CFS case. Accutane when I looked it up, seems to be a form of vitamin A, so maybe she has some rare medical issue around that. It was that which makes me really wonder if she has something else.

    Ive found most doctors have not a clue when it comes to unusual issues with vitamins or supplements or with genetic issues around these.

    That and not knowing symptoms or having diagnoses, is enough to make me question where ME/CFS in this case or not.
     
    Last edited: Jan 4, 2015
  14. Sidereal

    Sidereal Senior Member

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    Most non-English speaking countries are not that familiar with the concept.
     
  15. Gondwanaland

    Gondwanaland Senior Member

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  16. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Best as I can tell, Mayo used to deserve their good reputation, but something went wrong since. I have heard more bad stories than good, even for people with usual kinds of health problems. Regardless of what's wrong, it seems that at Mayo you will get an expensive workup and a high chance of being told it's all in your head.

    I do not know what the doctor situation is in Sweden (whether doctors are assigned by area or if one can freely switch), but it could help to keep changing doctors and practices until you find someone who is more observant. Or at least someone who will help you with symptoms even if they cannot diagnose you.

    Nothing wrong with flying across the world to an ME specialist if you think there's a good chance it's that though.

    I hear there are some clinics that specialize in diagnosing hard-to-diagnose patients, but I haven't heard any stories from anyone who has been there.
     
    Last edited: Jan 4, 2015
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  17. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    a phrase like that should be at the top and bottom of every page here
     
  18. jamienoble

    jamienoble

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    Thanks alot for all your answers.

    Sorry to confuse you all, i don't have ME/CFS.
    But i also have fatigue and my brain is working slow..

    I divide my symptoms into 3 sections:

    Appearance - I look ill, pale and sick. My eyes are either round & tired or starring looking with eyelids hanging and dark underneath. I look pretty much like a drug addict, that's the closest comparison, but its still different..

    Brain - It feels like my brain and thinking is blocked, concentration problems, i often forgets what im going to say, nervousness, bad memory, easily irritated & so on..

    Body/The Rest - Bad body odor and urine, hair is dry and lifeless. Fatigue, no matter how much i sleep i feel tired. Its not that i have to sleep but im pretty much always exhausted with little energy. Mornings and nights are the worst, i cant work full time because im too tired every morning and also @ evening/nights.

    I can however move myself perfectly and i don't have any pain.

    The strange thing is that i haven't found a single person anywhere in the world that has had a similar experience.
    Accutane can only "cure" skin problems, cancer and possibly Gilbert Syndrome.
    Whatever disease i have it must be very very rare, most likely its something i have had since my birth.

    I have had my investigation going on for over 8 years but i don't even know what kind of disease i have..
    The reason i dont take Accutane again is because it doesn't provide me with any answers, i already know that it can temporarily cure me (if it happens again)

    I dont have lyme disease and its not the Thyroid, those are the only things im 100% sure of.

    Do you think Dr. Kaufman, Dr Enlander or Dr Meirleir could help me with this?
    I have no problems travelling to USA if the doctor believes he can help me, when i asked Mayo they couldn't tell me anything. I could however speak to one of their doctors for 500 dollars if i remember correctly.
     
    Last edited: Jan 4, 2015
    jeff_w likes this.
  19. PennyIA

    PennyIA Senior Member

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    Yes, I'd strongly agree with this one.

    When I went and was pretty shocked they couldn't diagnose me - they told me that they find over 75% of patients aren't able to be diagnosed (?!)... which seemed high. But that's what the doctor managing my case told me. During the 'treatment' which was basically GET/CBT in disguise, they did finally break down and agree to run a simple test for me - which was when they found out I was b6 toxic.
     
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  20. jeff_w

    jeff_w Senior Member

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    Here is how Dr. Kaufman works. You first call the Open Medicine Institute. They have you fill out a long questionnaire and provide a written timeline of all your symptoms. Dr. Kaufman reads what you've written. If he feels he can help you, he will let you know. If he feels he can't help you, he will let you know that, too. You have nothing to lose and so much to gain by contacting them and going through this process.
     
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