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Dercum's Disease happens in Guys too
20 years if searching for help from all various Dr’s, from all various insurance’s available. Maintaining career, and marriage with an unknown pain worsening each day, and never knowing what it is. Working circles around my peers just to be put out of a job after making requests for ADA accommodations, and generally discriminated.
Now unemployed, temporarily disabled, now disabled. All while my health deteriorates with complications worsening over time. Searched out neurologists who all doubled and tripled-down on misdiagnosis. My personal advise is, don’t waste your time with Neurologists, they generally are useless in Dercum’s and will deny the disease and common known symptoms exist. I finally received a diagnosis, after consulting Dr. Herbst. I found out what I’ve been telling Doctors for years, but they just ignored me.
If there is one takeaway that is consistent in many stories I’ve read it’s – don’t trust your health care if you don’t think you are receiving the proper care. Keep searching, do all that you can to explore all and every single option there is to find a doctor that will listen to you. If you sense you have an ego-driven Dr. – dump them, and find someone else – they are not worth your time. Get a referral to a Endocrinologist, and a Dermatologist, and you may get somewhere.
I still don’t have a PCP that will work with me easily, it is a struggle to get anything done that is not their idea. You need a witness in every appointment if your going to get anywhere. If you attend your Dr. appointments alone, you will be taken advantage of or ignored.
There are no good take-a-pill pain remedies. The only thing that barely helps is full spectrum double strength CDC salve, and that gets expensive. I wish there was some better option for pain relief.
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