My HMO refuses to treat my rare disease Dercum’s Disease. They kept telling me it was only fibromyalgia, even though the lumps kept multiplying and were so painful that I was bedbound and barely cognizant of the day. I would wake to my own screams. I found my own diagnosis but had to fly to the only specialist to have it confirmed. When I had brought the possibility up to my HMO only the dermatologist believed me and she was told I was exaggerating and had fibromyalgia and just wanted pain meds. The specialist confirmed what I had feared and gave me a protocol of many treatments to try. Top of the list was pain meds. They still refused. I got treatments from her. HMO had me go for a second opinion. I did. Got confirmed. Still no treatment. I just paid out of pocket this past year for low dose methotrexate and we found that it took Fentanyl 75mcg every 48 hrs to subdue the pain. I have been taking that since last January. I stopped needing even any breakthrough meds so I stopped getting refills. NOW, my specialist has dropped all scripts for pain meds. No decreasing dose….She is terrified to treat me with any because of a conference she went to. She told me to start stretching out to three days last month, which I kept trying to do, but would be bedridden on the third and first day of the patch. Apparently, she forgot I didn’t have enough meds for breakthrough and since I didn’t comply the entire month, she is using that fact as the reason for breaking off. When she ordered me to do it again immediately, I reminded her that the last prescription I had for Percocet was from last year and I had only about 10 pills(which I had forgotten about.) I haven’t heard back but I suppose she won’t write me any more Percocet, either. I was suicidal, the pain was so bad before the pain meds. I wish I could enjoy these last two months but I need to find a compassionate pain doctor and I have tried so hard here in CA, but had no luck….
Does this sound like failing to meet the standard of care and best practices ? I would like to see the brochure on that conference… and who the speakers were and the topics on the agenda ?
Filed under: General Problems
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