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Autoimmune mystery

Autoimmune Diseases | Last Active: Sep 16, 2023 | Replies (90)

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@slkanowitz

First, let me say how sorry I am that your wife is so sick with no clear diagnosis. The autoimmune diseases can be severe and evade identification for many reasons. It’s not uncommon for the symptoms to appear before any lab tests turn positive. The time between symptom onset and full lab evidence that results in a diagnosis can be months or years. There’s also a lot of overlap among the AI diseases, both in symptoms and lab results. It’s important for her symptoms to be treated to help her feel better and be able to function, even if minimally. The inflammation that accompanies most of the AI ailments causes severe fatigue. That inflammation is reflected by 2 blood tests, the sed rate and CRP. I would recommend you get copies of all test results that are done, and try to learn about them. The two of you will be able to understand and help the diagnostic process. The rheumatologist is going to be the main investigator for her case, and it’s appropriate to get a second opinion any time you feel the need. I would also recommend you keep a calendar of symptom changes, especially any new ones, and any meds, vaccines or concurrent illnesses such as infections. The inflammation usually responds well, sometimes dramatically to oral steroids like Prednisone, and sometimes patients are treated with steroids both as a diagnostic challenge and to relieve symptoms. This is done cautiously and after ruling out infection. Vaccines and infections can trigger AI reactions, so the calendar can help establish the temporal relationship of symptoms to other events. Some blood tests can be intermittently abnormal, so repeating tests can be helpful, especially the antibodies that help identify AI diseases, to try to “catch “ a positive result when it occurs.
On a positive note, AI diseases are generally treatable to control symptoms and prevent organ/ tissue damage. Once this ailment is diagnosed and treated, your wife may recover significantly and be able to resume her usual activities and career. Be prepared that this could take several months and a great deal of patience. I hope you get answers soon and she responds well to treatment. In the meantime, be assertive at asking for what you need and willing to accept help from others.

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Replies to "First, let me say how sorry I am that your wife is so sick with no..."

@slkanowitz I see that you just recently joined MayoConnect and we’re certainly glad to have you! Your explanation of autoimmune disorders was very helpful! The delay between onset of symptoms and final diagnosis can be very difficult to understand. I know that some people wait years to get a proper diagnosis and that’s a real problem.
Do you have an AD? You certainly have an understanding of it all! Thank you!