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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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Dear Michelle,
Welcome here. Sorry you are unwell. Are you in the Us or Uk? I am in the UK, and have no real idea of the way things work anywhere else. Lupus can be hard to diagnose and sometimes time is needed, which makes it very frustrating.
You are quite right that many people have a hard time getting help.
Wherever you are we will all be here to do what we can for you.
x Lola
 

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Hi Michelle, welcome. Here in the states the ANA blood test is most often used to help dx lupus, but it's by no means the only way. As Lola said, it can be very hard to dx and sometimes takes years. There are others here who can give you more complete information so hang around. There's lots of help to be had here.
 

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Hi Michelle

Welcome to the Forum. If you suspect you might have Lupus or some type of autoimmune disorder, the first test thats normally run is the ANA (Anti Nuclear Antibody) test. This is a simple blood test and your own doctor can order this. Although having a positive result doesnt mean you have Lupus, it can mean there is something autoimmune going on and will usually be enough to get you a referral to a Rheumatologist who can do some more specialised testing.

What kind of investigations have you had for the pains in your joints?

I had never heard of Kikuchi's disease before but I googled it. It seems very rare.

Let us know how you get on with your doctor
Take care for now
Joan:rose:
 

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Hello Mikiec

Welcome to the site. I am sorry to hear you are feeling so bad at the moment. I was diagnosed last year with lupus and have found the guys and girls on this site really supportive with a wealth of knowledge and experience to share with you.

I hope you find the answers you are looking for soon and are feel better, don't forget you are not alone, we are all here to help and support you. :grhug:

Take care
Claire
 

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Discussion Starter #6
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
Michelle
x
 

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Discussion Starter #7
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
 

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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
Michelle
x
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:)
Ainka
xxx
 

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Discussion Starter #9
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!

Michelle
xxx
 
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