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jamiekk (@jamiekk)

Kikuchi disease

Autoimmune Diseases | Last Active: Oct 28, 2021 | Replies (22)

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@colleenyoung

Hi @jay723, Jenn, welcome to Mayo Clinic Connect. It can be so frustrating to have a rare disease that many doctors are not familiar with. I'm sure @twood412 @jamiekk @gretchenv15 and @dloft know exactly what you mean and have had similar experiences when advocating for care for themselves or their child. I also think @becsbuddy can relate to having an unresolved autoimmune condition and the fatigue and on going effort it requires to get relief.

There have been a few case reports of systemic lupus erythematosus (SLE or lupus) developing several years after recovery from Kikuchi disease. Did the lupus testing prove to be positive for lupus? Jenn have you seen a doctor who specialized in Kikuchi disease?

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Replies to "Hi @jay723, Jenn, welcome to Mayo Clinic Connect. It can be so frustrating to have a..."

Hi Colleen, thank you for the response. I haven’t been tested for lupus in a while but they have told me me I am negative for Lupus. I cannot find anyone who specializes in it. I have tried to see a rheumatologist but I am told they don’t deal with Kikuchi and almost every doctor I have ever talked to about Kikuchi just looks at me like I’m crazy or don’t give me any resources to go to.