Kikuchi disease

Posted by jamiekk @jamiekk, Dec 9, 2017

Has anyone been diagnosed with this disease? My 30 year old son has been but there is so little information on it and the Drs he has seen it’s the first time they have heard of it. He had it in his neck in February 2017 it was removed and he got better. Now he has a softball size lymph node in his abdomen that the Drs think might be kikuchi disease again. They are doing a biopsy next week but the problem is they aren’t sure if they will be able to get enough to tell. Surgery to remove is risky because it is behind all of his organs. I’m a very worried frustrated mother! If anyone has info that might be helpful to us PLEASE reply! Thanks so much

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@missjean26

I was diagnosed with Kikuchi July 2018. I had my lymph nodes on my neck swell up. They did a biopsy and told me about kikuchi. I had bad fevers, night sweats and my arms were weak. I had it for three weeks and I was discharged with ibuprofen. Three years later which started July 4/21. I am back with body aches, rash & sore joints. I’ve seen about 8 doctors including a rheumatologist since and they hardly know about kikuchi. I’ve done so much bloodwork and tests for all types of diseases even lupus, Lyme disease, you name it they tested it. It would be great to find someone who knows more about the disease. Since the diagnosis, I’ve had more health problems. Before that, I was perfectly fine. I have more tests coming up but this is hectic and tiring. Please send me more information about kikuchi.

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Hello @missjean26, Welcome to Connect. I know it must be difficult when you have a rare medical condition and the doctors have not been able to provide much help. It is good to advocate for your health like you are doing now to learn as much as you can about your condition. Here is some more information about Kikuchi that you may not have seen.

— NIH: https://rarediseases.info.nih.gov/diseases/6834/kikuchi-disease
— NORD: https://rarediseases.org/rare-diseases/kikuchis-disease/
— Orphanet: https://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=50918
— Kikuchi Disease: https://www.ncbi.nlm.nih.gov/books/NBK430830/

Sometimes it takes patience and persistence to find a doctor who specializes in rare diseases. Is a second opinion at Mayo Clinic an option for you? Or a major university health center?

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@missjean26

I was diagnosed with Kikuchi July 2018. I had my lymph nodes on my neck swell up. They did a biopsy and told me about kikuchi. I had bad fevers, night sweats and my arms were weak. I had it for three weeks and I was discharged with ibuprofen. Three years later which started July 4/21. I am back with body aches, rash & sore joints. I’ve seen about 8 doctors including a rheumatologist since and they hardly know about kikuchi. I’ve done so much bloodwork and tests for all types of diseases even lupus, Lyme disease, you name it they tested it. It would be great to find someone who knows more about the disease. Since the diagnosis, I’ve had more health problems. Before that, I was perfectly fine. I have more tests coming up but this is hectic and tiring. Please send me more information about kikuchi.

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@missjean26 i hope you’ve been able to find out more about Kikuchi disease. The biggest hurdle to getting a diagnosis for an autoimmune disease, is that the doctors aren’t being educated fast enough. The list of AD has just exploded in the last 10 years. The list of resources that @johnbishop gave you should help. Try calling them just to see if they have a referral list. Here is another resource: https://rarediseases.info.nih.gov/guides/pages/25/how-to-find-a-disease-specialist
Will you let us know about any success you have or what you learn?

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