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jen12 (@jen12)

Desperately Trying to Get Diagnosed

Autoimmune Diseases | Last Active: Dec 1, 2020 | Replies (75)

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@johnbishop

Hello @jen12 — Welcome to Mayo Connect. I'm am sorry you are having a problem making an appointment at Mayo Clinic Rochester. I did see a suggestion in the following discussion:

Groups > Visiting Mayo Clinic > Diagnosing Autoimmune disease
https://connect.mayoclinic.org/discussion/diagnosing-autoimmune-disease/

The suggestion in the first post was to find a Mayo trained doctor in your area (go on the internet) and make an appointment with him/her. If they can’t help you, they will refer you to Mayo Rochester Campus. Have you tried having your doctor refer you to Internal Medicine instead of Neurology? I think the specialized areas are generally harder to get an appointment with but once you have an appointment they all work as a team to find a diagnosis.

It’s disheartening to hear about the challenges you had seeking care at Mayo Clinic and that you are left feeling “not wanted as a patient”. I encourage you to call the Office of Patient Experience to tell them about your experience.

Office of Patient Experience
8 a.m. to 5 p.m. CST, Monday–Friday
507-284-4988

You might also be interested in the following TED Talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome — What happens when you have a disease doctors can't diagnose:
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

John

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Replies to "Hello @jen12 -- Welcome to Mayo Connect. I'm am sorry you are having a problem making..."

Sorry for my late reply. I have actually talked to a Mayo-trained doctor in my area– he was the doc that diagnosed me with functional movement disorder. However, that diagnosis totally ignores my other, frankly more-pressing symptoms. I may ask him if he is willing to refer me to Mayo for my other symptoms, but he seemed reluctant to do anything for me before I'd finished the PT that he told me to do. I am very concerned that he may be the type of doctor that if I don't respond to the treatment he's prescribed that he will give up on helping me entirely. In my experience, doctors are very smart people that really, really hate to feel stupid– and when they can't diagnose a patient, they feel stupid, and then just stop trying to help the patient because it makes them feel dumb to not understand. I honestly have had only 2 doctors so far that seemed comfortable in not knowing what was wrong with me, & they were also the only 2 doctors that gave me any further assistance after they understood that they couldn't help me (they referred me to other doctors that they believed were better-suited to help me). The docs that seem to get their egos bruised by being unable to diagnose me just kind of kick me out without further direction, which is tremendously frustrating.

Also, I have seen that TED talk before as well as the documentary Jennifer Brea made about CFS/ME (Unrest). They are very good resources! I definitely fit the bill of a CFS/ME patient, but every doctor I've seen so far has been totally ignorant of the disease & will barely talk about it if I decide to mention it (I get shut down very fast because they tell me they don't know much of anything about it & therefore can't diagnose me with it & move on to the next thing). I am going to keep searching for a diagnosis, whether it ends up being CFS/ME or not, though. I still have 1 or 2 other things I suspect I may have that I need to get checked out before I aggressively seek out a CFS/ME-literate doctor.

Thank you very much for your advice & the links you've provided as resources!

Jen…you are not alone. Drs frustrate me. Older I get the more I realize they are God's. What is a TED. Talk.