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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 Michelle im glad ive found you

Mikiec;526784 said:
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
Hi Michelle

Im sorry to hear that you felling unwell,

Ive just found this site & im glad to find people with the same illness as me. I was told i had kikuchi's disease in 2002, since i got ill ive had a number of different problems, ive never really felt myself again. I ve just now been told i have a heart condiction among a number of other things, just like you ive been teasted for lupus a number of times, the doctors feel that i have it but are finding it hard to catch, in the last 6years. They say it's not important to have it in black & white but i am presenting all the symptoms of lupus. It's very difficuilt to get people to understand why im always feeling tired, Ive had two flare ups of kikuchi's over the 6 years, the last one was in 2006, they say that is very rear, and since that time i have felt even worse.

Kikuchi's can affect people in many different ways and last for as long as it want's to, i know that mine is still there 6 years later and suffer with my glands swelling and fever at lest once a month. I've just been reffered to another hospatial up london called the royal free, as i need to get some more test done, ive been at my hospatial for six years and they really cant help me anymore, you need to ask to go to a hospatial that deal with rear illnesses and hopefull shead some light on your illness.

I would be intrested to know how your felling, and if you have anythink you would like to ask me please do as i have been living & going throught a lot over the pass 6 years that i cant even start to go into now.

Oh 1 more thing i am of caribean back ground but i do have a half spanish grandmother from which is where i thing i got it from, at the age of 32 she was told she had TB and another raer illness that they didnt know what it was in them days, she passed away when she was 33, in them days they didnt know what kikuchi's was. so you need to look into you family back ground and find out if they was anythink of kikuchi's back ground.

I hope i havent been to informative for you or scared you in anyway, but i know how you must be feeling now, just wanting to know what kikuchi's is all about, & it may in your case be a mild case or may go away. But you need to make sure that the doctors watch you very closley for several years to make sure other things dont develope from this.

I will speak to you soon take care of youself:)
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