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Kikuchi disease

Autoimmune Diseases | Last Active: Dec 12, 2023 | Replies (25)

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@jay723

Hello my name is Jenn, back in 2008 I had several swollen lymph nodes in my neck which all the doctors thought was lymphoma, I was sent to and ENT dr where they removed a large lymph node from my neck to biopsy. It was KIKUCHI. The doctors told me my swollen lymph nodes and flu like symptoms would resolve on their own. After a few months they did subside. Over the years I have had sever medical issues and the symptoms are treated as individual issues, however friends and family had directed me to this chat because I they think my medical issues all stem from Kikuchi. I have fibromyalgia symptoms, breathing issues, several ovarian cysts and have had to have surgery to remove, the breathing issues are getting worse, I have been tested for lupus ugh I’m a mess oh and recently I had a lump removed from one of my thighs I have a couple others on my body but this was getting bigger and would itch all the time anyway it was removed and determined that it was related to my Kikuchi. Every time I mention Kikuchi the doctors just look at me funny and shrug because they don’t know what it is or don’t know enough about it to even discuss it. I just finally want some answers as to what is going on instead of telling me I just have all these medical issues that are half a** treated. I’m miserable and I’m fatigued and tired all time and cranky from pain and feeling like this will never be resolved. I’m not sure if anyone else had or is experiencing any of these health issues but if you have or know anyone who would would be able to help me figure this out. Thank you

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Replies to "Hello my name is Jenn, back in 2008 I had several swollen lymph nodes in my..."

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?

@hopeful33250 Sending prayers your way