Hi, have a rear illness called Kikuchi's and im intrested to speaking to
pepole with they same illness as ive never spoke to or meet anyone
with this illness, im intrested to find out how other people are feeling & if they ever get back to feeling normal again.
well the doctors say that i have all the symptons of lupus i have tbeen tested a postive & negative ANA which is very confusuing, i have now been reffered to a new hospatial for more testing, the royal free in london. Ive been feeling ill for the pass 6 years & ive now been told i have a few heart promblems SVT & TOE.
Welcome to the forum. I'm sorry you have been unwell for so long. When were you diagnosed with Kikuchi's? What is your story, and are your doctor's wondering if you might now be developing SLE? What are your symptoms?
For those (like me) who'd never heard of it, here is a link....
If you look through the pages linked to the home page here, you'll find information about the symptoms and diagnosis of SLE. There are so many symptoms, and each of us has a different story and different set of symptoms:hehe::sad::hehe:
As a child, I had chronic lymphadenopathy (literally years), but didn't develop lupus until adulthood. As far as I know I didn't have Kikuchi's, although from reading a bit it seems it is a tricky diagnosis and maybe often missed.
Lupus can also be tricky to diagnose, but the first important thing is that it is considered. So you are on the right track.
Like Anika I also have kikuchi's disease and the consultant that I saw had to operate on me (he removed 3 lymphnodes from my neck) and it took 2 weeks for the tests to come back with the diagnosis. The symptoms of kikuchi's disease mimicks hodgkins lymphoma so you can imagine the time both my family and I had trying to deal with it and I guess that Kikuchi's came back as the lesser of the 2 evils at the time. My brain could only process one thing and that was that I didn't have cancer.
Kikuchi's disease seems to go hand in hand with Lupus although getting the tests done is proving harder than I thought. Mentally I've had enough of doctors but physically I know I need to go! I have pains in my joints in my hands, knees and feet, constantly lethargic, my hair falls out in handfuls and sometimes I get so melancholy its bordering on depression. My consultant recommended that I get tests for Lupus as I was displaying the symptoms prior to my kikuchi's disease diagnosis.
I've never spoken to anyone who had kikuchi's as well because of its rarity and when I got Anika's reply to my post I was relieved that I wasn't alone although her case is a lot more severe than mine.
This board has proved more useful to me than I thought possible! Thanks to all for being here!
Hi Anika, i was diagnosed with kd in 2005 after having my lymphnodes removed from under my right arm. at the time i was very underweight, fatigued and generally unwell. within 6months i was then diagnosed with sle. It is good to know that i am not alone with kd and after having a few years of good health and after the birth of my daughter 12 months ago i have now started to deteriorate quickly..it is a very difficult time for me as i have become unresponsive to my usual meds and dr's always seem to put all symptoms down to sle alone.:sad: