Connect
Getting an appointment
Hello,
my wife and I are starting to put together a package to send in to Mayo. We are Canadian, and for twelve years she has been dealing with an undiagnosed mystery disease (she is 25). Mayo is a last resort at finding a diagnosis and treatment. Does anyone have advice on how best to present her medical history to increase our chances of getting seen at Mayo? Is there a high probability of not getting an appointment? I ask because her test results are often normal, and yet she suffers an immense amount of pain which renders her constantly bedridden, unable to work, study, travel, etc. etc.
We are very eager to have the opportunity to go to Mayo, and any advice on how to get there we would greatly appreciate.
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
Hello @kspiel,
Rosemary (@rosemarya) shared some great information that I think you will benefit from here. It is part of another discussion like yours - here is a link to her post: https://connect.mayoclinic.org/comment/77872/bookmark/?ajax_hook=action&_wpnonce=9a94beea80.
I think this TED talk might also be helpful:
What happens when you have a disease doctors can't diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with
myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose
John
@kspiel, I want to refer you to the following discussion forum where a member asked a similar question.
https://connect.mayoclinic.org/discussion/getting-your-first-appointment/
I think you will find some very helpful information in this conversation. Let me if this is the information you are looking for.
Rosemary
-
Like -
Helpful -
Hug
1 Reaction@johnbishop - Thanks, John., for the notice. Glad to share what I know.
Rosemary
-
Like -
Helpful -
Hug
1 ReactionHi @kspiel,
May I ask if your wife's doctor(s) could perhaps refer her to Mayo Clinic, and arrange an appointment? This webpage has detailed information about our Referring Physician Service:
https://www.mayoclinic.org/medical-professionals/provider-relations/refer-a-patient
-
Like -
Helpful -
Hug
2 ReactionsThanks for all these replies, so helpful. What is an average wait time once a referral is made?
-
Like -
Helpful -
Hug
1 Reaction@kspiel I got my appointment on a Wednesday, and was at Mayo-AZ on Monday.
-
Like -
Helpful -
Hug
1 Reaction@kspiel, Have you contacted Mayo Clinic with this question?
Because, I wonder whether season of year, or the particular department, or even the severity or nature of the appointment has anything to do with it.
Rosemary
-
Like -
Helpful -
Hug
1 Reaction@kspiel I have been to Mayo for testing and/or treatment. It was a waste of time and money. However, I simple chose the wrong Mayo Clinic. But I learned a lot. I have written up my medical history and made it available to everyone at https://bit.Ly/1w7j4j8 I do not expect that anyone will follow my pattern. I have worked on it almost every day for two years. So you might be able to look at it and get some ideas. There are multiple formats, PDF, DOCX and ODT. Look for the word "Amyloidosis". So take your pick, and I hope it helps.