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Which subspecialty physician is recommended to treat this disorder?
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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?
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/.
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Thank you. No, he did not. He seemed baffled & told me he's never heard of this disease.
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