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Frustrating To Have Symptoms Without A Diagnosis

Posted by SusanEllen66 @SusanEllen66, Oct 12, 2022

I have all the symptoms of a specific autoimmune disease. My rheumatologist in town, and the rheumatologist at Mayo are refusing to give me a formal diagnosis because ALL of my tests are normal.

So here I sit, trying not to get upset when my body hurts, etc. I’m taking prednisone, but I have to wean myself off it slowly now. That’s a separate sob story!

Hopefully, I will get worse and one of the tests will finally show the story! Sounds strange but it’s an easy way to get this moving…

I have so much to be grateful for that I should now go and count my blessings! 🌻

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Mentor
John, Volunteer Mentor | @johnbishop | Nov 2, 2022
In reply to @ferguson23 "Hi, I am new to this site and was intrigued to see that others have suffered..." + (show)
@ferguson23

Hi, I am new to this site and was intrigued to see that others have suffered through the stress of no diagnosis. Yes, I believe it is a real stress in itself. Although I am a recently retired RN, I now see my doctors visits as rather pointless as although my symptoms worsen, there does not seem to be a definite diagnosis and I am beginning to feel as though I should not be "bothering" a busy medical professional. As a 2 time cancer survivor, I don't immediately think that it has returned when I am in pain and suffering, but I do know myself well enough to know that something is wrong. And how do I begin to treat the problem if I do not know what the problem is? Assertiveness is not my strong point.....and suggestions?

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Welcome @ferguson23, I think a lot of us struggle with assertiveness when it comes to talking with our doctors. But like you say, you know your body and what you are feeling much better than the doctor so I'm thinking what helps is to be able to communicate better with our care team and doctors. One of my favorite sites for suggestions is the Patient Revolution. Here's a page from the site you might find helpful formulating some of those questions.

-- Tools For the Visit:
https://patientrevolution.org/visit-tools
I normally write down a few questions I'm trying to get answered so I don't forget to ask them. Do you normally write questions down before you have a doctors appointment?

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