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dorrielee (@dorrielee)

Lupus diagnosis need help

Autoimmune Diseases | Last Active: Sep 17, 2020 | Replies (16)

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@gingerw

@dorrielee I have found keeping a journal of symptoms, when they occur, how strong they are, time of day, your activity, etc. may assist you and your medical team in figuring out what is going on. Can you do that?

When I was diagnosed with lupus in 1988, it took several months, while they narrowed down disorders. Each battery of test results determined what they would do next. I have no idea if things have changed since then, but my guess is "yes" for how lupus is diagnosed.

We look forward to hearing about your journey to Mayo Clinic.
Ginger

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Replies to "@dorrielee I have found keeping a journal of symptoms, when they occur, how strong they are,..."

@dorrielee In my family, we have a bundle of DNA issues, including Lupus, multiple myeloma, LECT-2, Gelsolin, RyR2, FKTN, and several others. One thing we have learned the hard way. That is, almost any of these issues can appear to be the only issue you have and localized (your only disease and in one spot), but in reality may be systemic (spread all over your body or organs) or only one of a bundle of diseases. My point is that one must always be open to additional diagnoses, or mutations. Many folks find this the most difficult notion to accept. We have had several deaths from these diseases, and each one from a different package somehow. What do you do about it? As Ginger says, track your own symptoms, signs and details. I have gone very serious about this (maybe too much). If you want to see how I do it, you can see it or download it free at https://bit.Ly/2jtypp9 under "Gelsolin". I get no record of who takes it or why. The most important portions, in my case, are the lists of diagnostic issues and the timeline showing my age when these issues become apparent. i.e.; the first cardiomegaly was noted at age 19, but the first enlarged lower lip was noticed by my wife just after my 80th birthday. SHEEESH!