Kikuchi Disease

[ebird33]

i did not know under which topic to place this question but put it under Lupus as links have been suggested between the 2 diseases.

i want to know if anybody else has suffered from Histiocytic Necrotizing Lymphadenitis AKA Kikuchi's Disease.

i know this is extremely rare but i have had it and would like to hear any body elses experiences with the disease. i found it extremely hard to manage as there are no resources available and my doctor had never heard of the disease and did not know how to help me. id also be willing to share my experiences with anybody else suffering with the disease.

[Hdlgf]

Can anyone recommend a physician to assist in the treatment of KFD

[mbenitez15]

   Hi, I'm 15 years old and I was diagnosed with KFD this month. I started out with swollen lymph nodes on the side of my neck, high fevers, nausea, fatigue, rash and I was really dizzy. It all really started the end of August. SI had no clue this disease even existed. I was hospitalized for two weeks but they had to transfer me to another hospital since they couldn't figure out what was wrong with me. They tested me for a million things. It was a very painful experience and I never want to have to go through something like this ever again.
    I got out of the hospital about two weeks ago. While in the hospital I got even worse. But then I started getting better. Once I got home I started getting really bad joint pain and it has gotten better but I still have a little pain. My doctor wants me to take some medication but I think It'll get better on its own. I'm so glad I found this page. I thought I was alone and no one could understand my pain. I'm still really worried this could turn into lupus which was what the doctors thought I had first. But for now I think I'll be ok. I'm  still really tired and dizzy at times. Is it likely to come back since most people said it did for them? I just want to get better. I haven't been in school for over a month and I've been getting homeschooled but it's stressing me out. Btw does stress have to do with any of this?
I'm just so worried.

[Ree0519]

Hello, I was diagnosed with KFD in May of this year after having some of the very same symptoms as most of you, nausea, fever, night sweats, fatigue which started in late march of 2015.

Since my biopsy diagnosis I have continued to have lymphatic swelling in my posterior triangle and supraclavicular area, not only have my remaining swollen nodes gotten bigger, I now have additional ones coming up in the same region and also on the back of my neck(all on the right side) and my nausea is becoming more constant again and the fatigue never went away.

My doctors didn't really tell me anything about it just I would get better and not to worry but here I am 6 months after the onset of my issues and I seem to be getting worse. I am also getting headaches pretty regularly and muscle pains in my back and legs. I am a 37 year old single mother and this has made life more difficult to say the least.

I have debated on going and seeing another doctor but I've been told to just wait it out, nobody really seems to understand how tired and not well I feel. I have been trying to stay positive but would really love to have a professional acknowledge what I have going on and help manage my symptoms I suppose.

I hope everyone is well, and I truly appreciate everyone sharing their stories.

[joelk39]

Hi, I have been diagnosed with KFD today, after worrying myself sick for months about lymphoma. I had a ~2cm matted lymph node on the left cervical region of my neck. Over the months, I expereinced low-grade fevers, on-and-off night sweats (not drenching), general malaise, and “burning” headaches.

For whatever reason, the headaches for me were the absolute worst part. It felt like I had meningitis but MRI confirmed nothing in my head. This has been going on since March 2015, but after the lymph node biopsy I am actually feeling a bit better. I can only hope that the doctors made the proper diagnosis, and it’s KFD and not lymphoma. The ENT doctor had never even heard of this disease. Also I am a white male living in the USA, so it’s quite rare for me to have this. I am however extremely fortunate that I don’t have cancer! There is a large lymph node above the incision, but its ill-defined and the doctor says it feels normal (possibly an inflammatory response to the surgery, which was only a week ago). I will be going back to see the ENT in 3 weeks.

Anyways, this disease has caused me a great deal of stress and worry about lymphoma… and even though I’ve been through a lot with the symptoms, I am extremely glad I don’t have cancer! I'd rather deal with these symptoms than have to go through chemotherapy... I am very fortunate to have a pathologist that was able to make the proper diagnosis.

[BAnirtak]

This board is so invaluable! I was diagnosed with Kikuchi three months ago after a surgical biopsy. It was a "diagnosis by exclusion". I hadn't had any fevers but my lymph nodes on the left side of my neck were so swollen (like golf balls) and had a very low WBC count this was for about two months. After many tests, xrays, MRI's, I had the surgical biopsy, and my WBC count went up to almost normal almost immediately, but I just had my blood checked 3 months post surgery, and it is low again. I don't have auto-immune markers, so now trying to find out if this is just part of the Kikuchi process or not as it is concerning.

[mls1248]

Hi,

With regards to the stress levels, I certainly believe that my diagnosis was stress related. I was completing my final University degree exams when I first noticed the lumps in my neck (which was later confirmed as kikuchi) and the disease has persisted for a year in which I have been a trainee teacher, therefore with an intensive work load. How are you now?

Thanks, Shelly