Mayo Clinic Connect
Which subspecialty physician is recommended to treat this disorder?
Hello @kimber361, welcome to Connect. I attempted to do some research, but the information out there is a bit vague. However, from what I was able to find, it did seem this condition is often confused for a type of lymphoma, but it is not. If you don't mind sharing, how long ago were you diagnosed, and what did your provider who diagnosed you suggest for moving forward?
Liked by John, Volunteer Mentor
I had a Whipple Procedure surgery on 12/26/17. The Whipple pathology report indicated out of the 17 abdominal lymph nodes removed, 12 of them were positive for lipogranulomatosis lymphadenopathy, a rare lyposomal storage disease. I only recently obtained a copy of the pathology report so I could take it to one of my new doctors. My surgeon never mentioned anything about this disease. I'll be contacting my surgeon's office on Monday to ask about it & to see if he can give me the proper referral to a sub specialty doctor. I've spoken with my gastroenterologist & he informed me this disease isn't part of his specialty.
@kimber361, did your gastro mention or hint what specialty would be appropriate? There is a recent discussion on Connect about the Whipple procedure as well, https://connect.mayoclinic.org/discussion/hollyc-looking-for-a-discussion-on-treatment-after-a-whipple-procedure-for/.
Jump to this post
Thank you. No, he did not. He seemed baffled & told me he's never heard of this disease.
version 188.8.131.52.3.2Page loaded in 1.265 seconds