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New member -Not sure what to do now

450 Views 8 Replies 6 Participants Last post by  Mikiec
Hi my name is Michelle and I'm really looking for some guidance on my next move. I have recently been diagnosed as having had Kikuchi's disease which is inflammation of the lymphnodes. It is a self healing disease but it seems to have links with Lupus. Before I was diagnosed with Kikuchi's, I had been at my doctor with pains in my hands,knees and heels and have not had any joy in a diagnosis for this. The doctors are continually testing me for under active thyroid to try and explain hair loss (not severe but enough to make me worry) and fatigue. All these things point to Lupus.... What should I be asking my doctor for? I've read through a few of the posts on here and it seems that there are several people extremely frustrated with the doctors and the tests! Can anyone help or give me some advice on what to do?
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Hi Folks,
Thnaks for your replies. It seems that this is the site for me to try and understand what I can do. I'm in the UK, specifically Scotland. Kikuchi's disease is rare and is more predominant in Asian women although I'm not of asian origin. They operated on my neck and removed 3 lymphnodes and this is how I was diagnosed with Kikuchi's disease. They initially thought I had Hodgkins Lymphoma and the operation was to rule this out after the lump on my neck reappeared. After doing the same thing and googling Kikuchi's disease, I found the link between it and Lupus. I don't know if I am putting 2 & 2 together and making 5 but I can relate to many of the symptoms of Lupus. I was hoping to speak with other people more or less in the same boat and could do with speaking to people like yourselves.

Thanks again for replying.
Take Care
Sorry, also meant to say that the doctors referred me to the hospital for my joints and I saw a physiotherapist.... don't know why... she couldn't give me any answers as she wasn't sure if the problem was arthritic or not. I'm going back to the doctor to ask for the ANA blood test as my next step. Thanks for the advice. If anyone else can suggest anything I would be grateful. Thanks xxx
Hi Anika,

For me the kikuchi's disease took the form of a large lump on my neck which was very tender at times and no pain at others. Initially I had it for about 5 weeks and then it disappeared for 2 weeks. Next thing I know its back and I'm in surgery. When it came back the second time the pain was more intense. Before the diagnosis I had and still suffer from extreme tiredness and pains in my hands, knees and feet, a rash on my legs, a little low at times and the occasional twinge of pain in my neck around the scar area.

Your case of kikuchi's sounds a lot more severe than mine. The consultant I saw said that the chance of recurrence was 3%. He recommended the lupus tests as kikuchis and Lupus seem to go hand in hand and that as I was already displaying symptoms I should get them done but this is proving to be harder than I first thought.

I am white british and have no family background of kikuchi's disease or lupus. Only diabetes runs in my family!

How were you diagnosed with Kikuchi's disease at first? Was it through your neck like me or another way? I've had a couple of sore throats since but nothing major. How are you feeling now? Do you think your symptoms are down to Lupus or Kikuchi's or both? Sorry a million and one questions as I have never spoken with anyone else who has Kikuchi's!

I'm back at my consultant (the surgeon who operated on me) in january as he is keeping an eye on me but I know the warning signs now. Straight to the doctors and no messing about as the pain gets too much! I have the consultants number too just in case. It mimicks the symptoms of Hodgkins so much that the doctors aren't willing to take the risk with me.

I hope you are feeling as well as can be at the moment and I would like to keep in touch with you to keep up with your progress and how you are feeling!

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