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jamiekk
@jamiekk

Posts: 1
Joined: Dec 09, 2017

Kikuchi disease

Posted by @jamiekk, Dec 9, 2017

Has anyone been diagnosed with this disease? My 30 year old son has been but there is so little information on it and the Drs he has seen it’s the first time they have heard of it. He had it in his neck in February 2017 it was removed and he got better. Now he has a softball size lymph node in his abdomen that the Drs think might be kikuchi disease again. They are doing a biopsy next week but the problem is they aren’t sure if they will be able to get enough to tell. Surgery to remove is risky because it is behind all of his organs. I’m a very worried frustrated mother! If anyone has info that might be helpful to us PLEASE reply! Thanks so much

REPLY

Hello Jamie (@jamiekk), welcome to Mayo Connect. I’m glad you found us. I can understand the worry and frustration of not knowing when there is not a lot of information available. I’m hoping we can get some helpful suggestions for you. I am tagging several members who have discussed Kikuchi disease to see if they can offer some suggestions. @bvanlaan, @twood412, @kelseydm, @kanaazpereira can you provide any information or suggestions for @jamiekk ?

Jamie, @kelseydm has a post here with a good suggestion:
https://connect.mayoclinic.org/comment/28830/bookmark/?ajax_hook=action&_wpnonce=d65d6508d4

If possible, can you keep us updated on any progress?

Thank you for being a strong advocate for your son. I think you have found the right place to search for answers.

John

Hi Jamie. I was diagnosed with KFD about 5 years ago. I’d love to chat with you.

@twood412

Hi Jamie. I was diagnosed with KFD about 5 years ago. I’d love to chat with you.

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Hi @twood412 – Just a suggestion to keep your email safe… It’s easy to send a private message to a Connect member. Just click on the username (@xxxxxx) and it will take you to their profile. Then click the Send Private Message link in their profile description. You can always exchange emails in a private message if you want.

John

@twood412

Hi Jamie. I was diagnosed with KFD about 5 years ago. I’d love to chat with you.

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Thanks John, will do! Could you tell me how to remove the previous message? I no longer have an option to edit it. Thanks!

@twood412

Hi Jamie. I was diagnosed with KFD about 5 years ago. I’d love to chat with you.

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Hi @twood412 , looks like one of our moderators removed the email address for you. We try and watch for this to protect our members. If you discuss any helpful information that would benefit others with Kikuchi disease in your private message, would you consider posting it here in this discussion. It can really help others in the same situation.

Thank you,
John

@twood412

Hi Jamie. I was diagnosed with KFD about 5 years ago. I’d love to chat with you.

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I’d be happy to. The single most important thing I can mention is that almost 4 years after my KFD diagnosis, I was diagnosed with late stage neuroborelliosis (chronic Lyme and co’s) which my doctors believe to be the cause of my KFD flare 5 years ago.

@twood412

Hi Jamie. I was diagnosed with KFD about 5 years ago. I’d love to chat with you.

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Hi @twood412,

First, thank you so much for answering John’s tag – I’m certain @jamiekk appreciates it too, and we are thrilled to see you return to Connect! You will notice that I deleted your email address. As @johnbishop mentioned, posts to the discussion board are public, and we don’t want you getting unwanted spam etc. We recommend sharing personal contact information by private message as it is a secure, private option. Thank you for understanding.

@jamiekk, although these two studies were published in 2006 and 2011 respectively, I thought you might wish to read them:
– Successful treatment of severe Kikuchi’s disease with intravenous immunoglobulin:
https://academic.oup.com/rheumatology/article/45/2/235/2899313
– Management of Kikuchi-Fujimoto Disease Using Glucocorticoid:
https://www.hindawi.com/journals/crim/2011/230840/

Jamie, you mentioned, “…the Drs he has seen it’s the first time they have heard of it.” Have you thought about seeking a second opinion?

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