← Return to Kikuchi disease

Discussion

Kikuchi disease

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

Comment receiving replies
@hopeful33250

Hello @gretchenv15

I am so sorry to hear of your daughter's continued problems with this disorder. I can understand your concern and I appreciate your reaching out to seek answers! I am glad to hear that you will be following up with the doctor in Rochester who originally diagnosed your daughter. This sounds like a very good plan.

While I'm sure you know a lot about Kikuchi Disease already, I did a little research and found some information on a rare diseases website. You probably already know most of the information, but thought it might be of interest to you. Just click on the link to read the article,
https://rarediseases.info.nih.gov/diseases/6834/kikuchi-disease
I look forward to hearing from you again. Will you post again and let me know how you are doing as you seek for answers?

Jump to this post


Replies to "Hello @gretchenv15 I am so sorry to hear of your daughter's continued problems with this disorder...."

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