Mayo Clinic Connect
Hello I was wondering if anybody here has ever heard of this autoimmune disease. If so, what treatment worked for you. Thank you
Hello, I just had an inguinal lymph node biopsy and the results came out as Sinus Histiocytosis/Rossi Dorfman Disease. I was wondering if anybody here has ever had this diagnosis. What treatment plan worked for you.. Please help
Hi @roger191, you'll notice that I merged the 2 discussions that you started into one discussion that appears in both the Autoimmune Diseases group and the Blood Cancers & Disorders group simultaneously. Given that Rosai-Dorfman Disease is rare, it will be helpful to have all the messages in one central place.
Personally, I am unfamiliar with Rosai-Dorfman Disease (sinus histiocytosis with massive lymphadenopathy – SHML) and found more information about the condition on the National Organization for Rare Disease (NORD) website here:
While it is difficult to hear that you have a rare condition, I wonder if there is a bit of relief that you got a diagnosis and can move forward with treatment. Did it take a long time to get a diagnosis? What treatment plan is being suggested for you?
Liked by John, Volunteer Mentor, lioness
@colleenyoung thank you. It has taken over six months for me to get that diagnosis. I'm yet to see any Dr, my appointment was set for next month. As much as it's been a relief, the pain has been somewhat unbearable because i have also been having chest pain. I was just curious to know if its related. Thanks for the link, let me read more about it
Liked by John, Volunteer Mentor
Roger, I hope the article will help you prepare for your appointment next month. Are you seeing a hematologist?
You may be interested in reading this discussion where members offer tips about starting with a new specialist.
> Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
i'd also like to bring @dazlin @peabody88 and @ecdhope who have also been investigating causes of histiocyte level changes and Rosai-Dorfman disease. They may also be able to help create a list of questions to ask.
Please keep us posted.
Thank you so much for your help and for the articles. Yes, I will be seeing a hematologist. I will keep you posted
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Roger191, a friends father was diagnosed with Rosai Dorfmans disease. He is literally on deaths door without appropriate care in his hometown. Did you get help from a good doctor that you could recommend?
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