Has anyone been to Mayo Clinic?

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I have an appointment at Mayo Clinic in MN next week. I’ve seen many, many local doctors (upstate NY) and not one of them has a clue about ME/CFS.

I read the Mayo website and am feeling discouraged, as they don’t seem to be especially knowledgeable about it, but maybe that’s just the web site. Does anyone have any experience with them? Thanks!
 

Gingergrrl

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I have never been to Mayo Clinic but they have a very bad reputation for "treating" illnesses such as ME/CFS, POTS, MCAS, or anything that they view as psychosomatic or a functional disorder.

On the flip side, they have an excellent lab that can run obscure blood tests and panels AND their lab results are taken very seriously by doctors around the world. It was some of their blood panels (PAVAL, DYS1, GAD65, etc) that discovered I had some autoimmune problems that led to actual treatments (prescribed by my own doctors) that led to vast improvements/ remission for me.
 

Sushi

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I read the Mayo website and am feeling discouraged, as they don’t seem to be especially knowledgeable about it, but maybe that’s just the web site. Does anyone have any experience with them? Thanks
One ME/CFS patient, who is himself a doctor, reported on his experience at Mayo that the bus drivers were great, but “leave the Mayo.” This was a few years ago but I haven’t heard any reports that they have gotten better. :(
 

jstefl

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I have made 25 trips up to the Mayo Clinic in Rochester, MN. They are pretty useless with CFS/ME issues, but the diagnosis for CFS/ME is to basically exclude everything else, and they are very good at that.

Until the cause of our illness is discovered, treatment will be very hit and miss at best, and much worse than that on average.
 

crypt0cu1t

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I have a friend with autoantibodies known to cause autoimmune encephalitis (AChR Ganglionic, CASPR2) who sought out a doctor at Mayo and was told that he is depressed and needs to stop chasing a diagnosis.

On the flip side, dr McKeon was actually very helpful to me so I think it depends on who you see.
 

Gingergrrl

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but the diagnosis for CFS/ME is to basically exclude everything else, and they are very good at that.
I agree with this and that is actually how I would view it if I were to have gone to Mayo a few years ago. Instead of going there and saying, "I have ME/CFS, what are the treatments?" I would have taken the opposite stance and said, "I am very ill and these are my symptoms but I have no idea what my diagnosis is" and let them run tests to hopefully find something that could be treated.

I have a friend with autoantibodies known to cause autoimmune encephalitis (AChR Ganglionic, CASPR2) who sought out a doctor at Mayo and was told that he is depressed and needs to stop chasing a diagnosis.
This is ridiculous that someone could have two autoantibodies causing autoimmune encephalitis and be diagnosed with depression and sent away :mad:. I'm assuming these were on Mayo panels which makes it even worse! I don't understand why someone trying to figure out what is wrong with them is considered "chasing a diagnosis" vs. being responsible, diligent, and persistent.

Mayo has saved a few of my friends when other doctors had given up or were unable to dig deep enough. They at least look at things from a multi-disciplinary viewpoint.
I do agree that they can be helpful with finding obscure diagnoses and digging deeper than most doctors in the community. I think it really depends if you get a good doctor at Mayo to oversee your case or a crappy one who labels it psychosomatic and stops looking further. I have never been there so I am basing this off of many stories that I have heard. I belong to another group with people who have the same calcium channel autoantibody as I do and many have been completely dismissed by Mayo and told that it is psychosomatic, anxiety, and other such nonsense.
 

Likaloha

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I have been to Rochester mayo twice, once for my fibromyalgia and once for their pain management clinic... This was well before my cfs was so bad but for me they were little help...they are very anti pain meds and they pushed me well past my limits.....but this was before I learned to be a better advocate for myself...I had hoped to learn more about my post-viral syndrome from my near fatal West Nile but never got any sufficient help for that... My hope is you get better help than I did and don't be afraid to speak up and advocate for what you need...I don't think my experience is really helpful for many here because I wasn't pushing for help with my cfs, but good luck... They were helpful with making appointments and my hotel had a great shuttle to get me there and back... I would not even be able to attempt going there today as I am much more disabled.
 

Belbyr

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I went in 2015. All I left with was a pamphlet for POTS and one for CFS. No treatment or therapy really. They checked my heart out, ran a few autonomic tests, along with some generic labs... that was about it. One of the neurologists told me I need to learn how to live with it and move on with my life, LOL.

I would hope that approaching year 2020 they would have some improvements but I fear they haven't.
 
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Hi All,
I’m in Rochester at the Mayo Clinic, half way through the first round of tests. After hearing from so many of you I wasn’t expecting much, but to my surprise was assigned a wonderful doctor, Zayd Razouki, who specializes in chronic fatigue syndrome. He acknowledged that Mayo still lumps various disparate illnesses under one umbrella (CFS, fibromyalgia, etc.), but they are well aware of ME as a discrete diagnosis, and he was very knowledgeable about it. I’ll be having a lot more tests, including a brain MRI to rule out other possible reasons for the brain fog, but for the first time I feel confident that I’m in good hands. I appreciated his forthrightness about there being no immediate cure, and encouraged by his knowledge of and receptivity to ongoing research. In short, the trip was absolutely worthwhile and my spirts have been lifted a little. No one in my area (upstate NY) had a clue how to deal with me, so I basically had to diagnose myself. It was a relief to have that corroborated by someone who clearly knew all about it.

I’ll keep you updated on any developments, but for now I hope that all of you find solace one way or another. Thank you for being there. This community has really helped me, and I’m grateful.
 

Shoshana

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I am very glad to hear all of that, @Centime Tara
We care about how it went for you personally and individually.
:hug:

Plus, it is good for all of us to hear that at least some of the doctors there, have been learning about this illness.

We each intended to help you, when you posted this first question, but you have also helped all of us, by your sharing about it! :thumbsup: