I live in Texas, the Dallas Fort Worth metroplex. I have had Dercums disease symptoms since the age of 13. I have been diagnosed with Dercums disease. To date I have had over 275 tumors removed.
I am a patient of Parkland Hospital in Dallas. I am undergoing psychiatric care, surgical care and seeing the pain clinic. I am having a very hard struggle to get the medications I need. I am more often than not given NSAIDs that do nothing for my pain. Hydrocodone, 10/325 helps the pain in my feet and hands while Diazepam is used to relieve anxiety, muscle spasms, and the depression I go through. I also take high doses of Gabapentin for the Neuropathy that has set in.
I have been suicidal for many years now. Most doctors do not listen, so I now take information to them from studies that have been done. Most of them still will not read what I present. I had to embarrass my plastic surgeon to take action using liposuction, after I had presented him with just three sheets of large print about Dercums disease, and all most important information highlighted, he told me that he would never find liposuction as a option to treat Dercums disease. I had to tell him that he just read it. He asked "where" I stated i the information I just provided you. The paper also provided all the Doctors names and information on how to contact them. On my next visit to schedule surgery he stated that he had spoken to a Doctor in Sweden who agreed with me.
I am now considered 100% disabled. I am very mad at most Doctors because they are not hearing this information in medical school. They stare at me with a blank face. Then they write a prescription with no knowledge of the disease. I tell them I can not take NSAIDs because they have no effect on me.
How can I reach out to the medical Doctors to inform them of this disease?