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Afraid will not be taken seriously
Autoimmune Diseases | Last Active: May 22 9:18am | Replies (54)Comment receiving replies
@beth71 - Thank you for sharing this. How absolutely maddening!
I am not so experienced in this kind of situation as you are, but my first reaction was - change your primary care doctor (is that the "ID"?) !!
Maybe not an option for some reason/s, but as you described and must have experienced it, the "gaslighting" coming off, at a minimum, as a lack of professional concern and medical attention, is greatly troubling, but as we hear from many others here, not uncommon.
Every patient needs to be as well-informed as they can be, yet it is on the professional/s to use all available knowledge and latest developments to the benefit of patients. I don't understand how this practice is tolerated across the board in the medical profession. If it is due to some kind of 'unrelenting, unreasonable pressure' from the monolithic insurance industry, then who is responsible for enabling and perpetuating that, to the "dis-ease" of compromised patients? How can there not be accountability?
Not intending to start a separate discussion on the insurance industry here, but if that is the source of the problem, as big as it is, where is the push and action toward reform? (Rhetorical Q, for now. 🙋♀️)
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You are correct in that insurance causes some medical care restrictions, but unfortunately, this is an arrogant Infectious Disease MD who says he only treats diagnosed infections. The kicker is I did not have a diagnosis before I went to him the first time. He is adamant that it is not a reinfection and that he more than adequately treated me, but I and he has no clue beyond visual inspection of my forearm. That is scary since my disease can affect numerous organs/systems since it is Extra-Pulmonary, making it more of a diamond in the rough. These infections are rare and most affect the lungs, making mine more rare than rare 😒.
Had an Ultrasound of my upper legs yesterday. Radiologist gave measurements and gave fat necrosis as a possibility but no definitive diagnosis. That only occurs from trauma, surgery or some kind of injury… if not from these, pancreatic issues are the root cause like pancreatitis or pancreatic cancer. I have a pancreatic dysfunction with hyperinsulinism. Have found research related to fat necrosis and missed insulinomas. A biopsy is needed to determine if this is an infection or endocrine issue…
Either way, prayers for answers with appropriate treatment are needed. My medical challenges have taken me on a very long journey….
Beth