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Dercum’s Disease: Looking to connect with others
Chronic Pain | Last Active: Feb 5 2:44pm | Replies (145)Comment receiving replies
Thank you for your good advice on case management. I'm curious, what if anything was the geneticist able to tell you? Dr Herbst had me get my genes done with the company Sequence and then diagnosed me with Autoimmune Lymphoproliferative Syndrome based on a faulty FASLG gene.
Do you also have MCAS? I was taking H1 and H2 blockers, but stopped them due to liver fibrosis and not wanting to stay on those meds indefinitely. I feel like my DD is also in hyperdrive and wondering if stopping the histamine blockers have anything to do with it.
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The geneticist didn't give me anything to go on. All I got from him was the diagnosis. But I needed that to go forward with clinical trials, doctors believing I had it. I have sent him articles on transpositions in PTEN gene, but I never hear back from him. I think doctors don't care to work on this disease and it's very obvious to me, why.
You know, I saw an article on the effects of Histamine in Dercums disease. If I can find it I will post it to you. I just read this today.... This series presents 7 cases where DD followed an infection either histoplasmosis, coccidioidomycosis or Lyme disease. Known changes in fat by infectious agents are reviewed. Early diagnosis and treatment of infections may prevent further damage to fat. Pretty interesting. Here's the link to it.
https://pmc.ncbi.nlm.nih.gov/articles/PMC6940691/