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Replies to "Hi Colleen, thank you for the response. I haven’t been tested for lupus in a while..."
Autoimmune Diseases | Last Active: Dec 12, 2023 | Replies (25)
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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.
Replies to "Hi Colleen, thank you for the response. I haven’t been tested for lupus in a while..."
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@jay723, here are some resources from reputable institutions that I found:
NIH https://rarediseases.info.nih.gov/diseases/6834/kikuchi-disease
NORD https://rarediseases.org/rare-diseases/kikuchis-disease/
Orphanet https://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=50918
https://www.ncbi.nlm.nih.gov/books/NBK430830/
You're not crazy. It takes patience and persistence to find a doctor who specializes in rare diseases. Is a second opinion at Mayo Clinic an option for you? Or a major university health center?