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rachelpatrick22 (@rachelpatrick22)

How Long Until Diagnosis?

Autoimmune Diseases | Last Active: Mar 17, 2019 | Replies (9)

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@johnbishop

@rachelpatrick22, that is certainly a lot of symptoms. There is another active discussion that may be helpful for you to read through and meet others who may have some of the same symptoms.

Groups > Just Want to Talk > Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments
https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

There is a TED talk by Jennifer Brea who became progressively ill with myalgic encephalomyelitis. Have you seen it?
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

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: https://www.mayoclinic.org/appointments

If you prioritized your symptoms which would you put at the top?

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Replies to "@rachelpatrick22, that is certainly a lot of symptoms. There is another active discussion that may be..."

Thank you! Well to be honest I do not even think it’s that difficult. I just need my doctors to do the tests for antibodies. I have been to 2 Rheumatologists and both refused to see me, stating they do not treat those symptoms. 2 neurologists as well. I’m beside myself because those are the specific kinds of doctors that is supposed to handle these things.

As of now, I have only had a TPO and ANA screen, and the TPO was because I practically begged my Endocrinologist to test antibodies. My neurologist wants to look at me and diagnose me with fibromyalgia without ruling out other possible autoimmune diseases with tests. And I don’t like the fibromyalgia diagnosis. I hurt, I’m lethargic, and symptoms vary by intensity depending on the day. This is not just in my head and I’m not willing to accept a lazy diagnosis without ruling out other possibilities. I just don’t understand why it is so hard for a doctor to check a box on a test order form to test for antibodies.

I went to the 3 Rheumatologist’s office today and broke down in tears begging them to see me and gave them all my medical records showing the abnormalities. Said I just need tests for antibodies. They will call later this week to let me know. I don’t know why it has to be so hard.