Share this:

My daughter was diagnosed, two years ago through a biopsy of her [...]

Posted by @bvanlaan in Bones, Joints & Muscles, Apr 12, 2015

My daughter was diagnosed, two years ago through a biopsy of her cervical lymph nodes, with a rare autoimmune disease called Kikuchi-Fujimoto. The only thing known about this disease is that it is presumed to be autoimmune and self limiting. There are rare cases of relapse. Well my daughters middle name should have been RARE. Two months ago she began feeling badly again and her cervical lymph nodes began to swell. In hopes of staving off the long term symptoms she went to a Rheumatologist who immediately diagnosed her with Lupus, before running a single test. My concern is that his snap diagnosis and treatment are not correct. She is unable to get into another Dr until July. I am hoping to find any additional information about Kikuchi disease that is not immediately searchable on the Web. No one in this area is familiar with this disease.


Posted by @kelseydm, Apr 13, 2015

Hi there. I'm so sorry to hear about what you and your daughter are going through! You're right, there is very little information online! I'm checking with our specialists and hope to have some more information for you in the next few days.


Posted by @kelseydm, Apr 14, 2015

Hi there. I spoke with one of our doctor's who works in laboratory medicine and pathology and has some experience with Kikuchi-Fujimoto. He suggested you send the lymph node biopsy specimen to Mayo Clinic for a second review and also contact a rheumatologist here for a second opinion on diagnosis and treatment. If you are interested in doing that, you can call one of these numbers to make an appointment: Arizona: 800-446-2279 Florida: 904-953-0853 Minnesota: 507-538-3270. I hope that helps. Please let me know if you have any trouble or additional questions.


Posted by @twood412, Jul 31, 2015

Mrs. Mohring,

My name is Tracy. I am the daughter with Kikuchi disease that you were contacted about. Since your last post, I was seen by another local rheumatologist and lupus was ruled out via lab tests. The "flare" ultimately died down by June and I stopped taking the steroids and plaquenil. However, over the last week or two I have started to notice lingering fatigue and increasing pain and stiffness in all of my major joints, which were two of the main symptoms associated with my last flare up. I contacted the lab that handled my biopsy, but was told the specimens had been discarded after 2014. You spoke of a doctor who had some experience with my disease. May I ask his name? Is there any new research or news on my disease? There isn't a single doctor I have seen who hasn't had to google my disease. I need someone who can help me, truly help me learn to cope and manage this disease.

Thank you.

Please login or become a member to post a comment.