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Dercum’s Disease: Looking to connect with others

Chronic Pain | Last Active: Feb 5 2:44pm | Replies (145)
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@c3p0

I have a suggestion for all of you who are not finding help. I have been all over clinical trials, treatments, genetic defects, everything that comes up in a search. I've seen a geneticist. dermatologist, of course my GP who has never heard of it and probably doesn't want to hear about it again. I decided to go a different route. I called my insurance and asked for a case manager. They will help you with getting approvals for testing, meds, procedures. They become an advocate for you. I am presently trying for approval to see Dr. Herbst, along with meds and testing. I have a wealth of info if anyone is interested? My disease is going into hyperdrive. Accelerating very fast. The pain is becoming intolerable. More and more lipomas. I wish you all luck and I would help any of you if I can. My heart goes out to all of you! Good luck.

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Replies to "I have a suggestion for all of you who are not finding help. I have been..."
ellenbret | @ellenbret | Jan 30 9:13am

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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ScarletB | @scarletb | Jan 30 10:03am

That's interesting to hear about the case manager. I logged onto my health insurance recently and noticed that I had an option to request a "healthcare advocate" - I didn't think much of it, found the information I needed for that day and then logged off.

I probably wouldn't have even thought about it again if I hadn't read your post. I'm off to explore what my health insurance means by "healthcare advocate" - if it's what you describe, I'll be thrilled! Managing this all by myself is exhausting.

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