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Hello @jackic -- welcome to Connect. I’m sorry to hear you are having a difficult time getting a diagnosis. Connect is a good place to share your health concerns and learn what other Connect members with similar health concerns are doing for treatments. There is currently another discussion for undiagnosed autoimmune diseases that may be helpful to read through here:
— https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/bookmark/?ajax_hook=action&_wpnonce=8933e3d2d7.
Also, I would like to invite other Connect members who have posted about undiagnosed autoimmune diseases to see if they have any suggestions. @lisabeans, @cmtg, @pinkmk, @aman_23_23, @mommaj, @tljam, @whitechinacat, @palscoreen, @terryblink, @pinkstar, @rebo, @v1crew, @jewel8888, @tbeckys, @WendyAnne, @559purplepatty, @atorset, @beff2468, @taterjoy do you have any suggestions you can offer @jackic?
I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:
Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.
Mayo Clinic Tours – YouTube Videos: http://bit.ly/2o3jvMj
I thought this video maybe helpful to let you know you are not alone
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
Replies to "Hello @jackic -- welcome to Connect. I’m sorry to hear you are having a difficult time..."
Hi @johnbishop - thanks for the information. My parent is coping with an undiagnosed autoimmune disease and has visited Mayo clinics 2x within the last 3mos now. Unfortunately, it seems that they only receive information through "the portal" and the specialty doctor is unavailable to have phone conversations (my parent lives in a remote part of the country & Dr. is in FL). Is this typically the case, or can I help them talk directly with the doctor? I believe navigating the "portal" is a difficult challenge for an aging generation and I know talking directly with the doctor after diagnosis would help tremendously.
@brenb - I recently had a test at Mayo Clinic in Jacksonville and wanted to talk to the doctor about the results. I sent the doctor a message on the portal and asked the doctor to call me and gave my home phone number. The doctor called me that afternoon and went over all the results with me. You may want to have someone help them set up the portal. All of the reports on each visit are in the portal as well as results of all testing. Also, any resulting diagnosis will be in the reports. They can also ask that the doctor call them directly as I did. I was diagnosed with breast cancer 5 years ago and had given the doctor the okay to call me with the diagnosis. This was done over the phone. Another suggestion would be for you to call the department that has diagnosed your parent and ask that the doctor call your parent. I have found that the doctors will call but you will not be given the doctor’s phone number. Just talk to the secretary or the doctor’s nurse. Good Luck!
Hi @brenb -- managing communications online can be challenging for some older folks in my generation (I'm 75). I don't have an answer for your question but I'm tagging our Director Colleen Young @colleenyoung to see if there is an alternative means of communication that you can use to help your parent.
May I ask if are able to use the patient portal for them? I believe this may be a way if they can authorize you to log in for them. That way you are able to send a message to their care team.
John
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Hi Thank you for your response. I will check out the other page as well as the video. Thank you. We live in the Greater Boston area so right now Mayo is not in our future. Working with a couple of doctors at Boston hospitals. Hoping maybe someone else had similar symptoms and could point me toward a diagnosis.