As a health professional and a patient who is currently experiencing this, it maddens and saddens me. I have an autoimmune disease on chronic high-dose steroids (immunosuppressed). In 2020, I developed external nodules on my Left forearm. Notified my specialists that I had "monsters growing inside of me". No one listened until 6 mos. later my Ortho said he would not operate on my knee until I identified. Of course, it became an emergent issue and with the help of a prior co-worker, I got an appt with Infectious Disease at my place of employment which is an Academic Medical Center. He sent me to Derm for a biopsy. The specimen was slow to grow enough to identify at the species level so was sent to Univ. of Washington for identification by its DNA. In the meantime, I asked my ID MD if imaging was needed to see if this organism was anywhere else, but he denied it. After 6 weeks, it came back as Non-tuberculin Mycobacterium Chelonae, disseminated disease. I was placed on double STRONG antibiotics for 14 mos. ID declared my infection resolved and declined imaging once again stating there is not imaging that can capture this infection.

Fast forward to this past October, I started to have pain in my left hip and outer thigh area when lying on my side. I still had discomfort with meds and a heating pad, so I decided to see if pressure from rubbing would help. Low and behold, I discovered nodules. Over the next couple of weeks, I gradually felt more and a large mass/cyst on my left inner thigh. Reached out to my ID and he essentially said that is nothing for him to handle because you can't get the infection I had again and that those nodules are most likely lipomas. Due to my infection risk, my Rheum sent me to ED and I was admitted When discharged, I was to follow up with my ID who still said that I had no infection for him to treat and that my nodules were essentially imaginary.

After ID sent me to every specialist who I knew would not biopsy and or treat my nodules or cyst, I now have them throughout both of my upper legs. When expressing concern about the increased # of nodules via EHR messaging, he replied that I was obese, overly anxious about insignificant clinical symptoms and have nodules that only I can feel... and he has yet to even lay hands on me to even evaluate for these nodules!!!

Needless to say, I am awaiting an appointment to be evaluated and treated as applicable at Vanderbilt... If this happens to patients with medical knowledge, I'm certain it happens more often to those who do NOT and this hurts my heart. They are sent home from the hospital or clinic with significant health risks of which they are clueless. Thankfully I am in Nursing Informatics now, as I could not be involved with such patient management decisions.

I apologize for the lengthiness and pray that you all do NOT have this type of experience!

Best Regards.

Beth