I was told by front desk staff that they see long COVID patients with neuromuscular issues. This was not true. The visit was a waste of time.
The MD who came in to see me said that they had discussed this in a group practice meeting and that the doctors all agreed to let the appointments be made, but that they have no experience, have not seen any of these patients yet, and that he had no idea what they were doing in academic institutions for long COVID neurological patients. He read back to me, never looking at me, but looking at his notes, saying that I had expressed that I had "joint pain all over," but this is NOT what I said. I quickly told him he wasn't listening and he was putting words into my mouth that fit a narrative that are inaccurate. The pain I have had is sharp, deep, central, and runs the length of all my extremities. It has not been "joint pain" other than my hands and feet somewhat. I shared with him what I had read is being done elsewhere for long COVID patients. All the while, I was painfully aware in this moment that I was more well read and knew more about the current treatment protocols for long COVID patients than this MD who is a neurologist by trade. I asked about a small punch biopsy for small fiber neuropathy. He told me that the doctor who did my EMG might do them, that he wasn't sure because she "had only been with the practice a short while - 5 years." I retorted back asking if I had heard him correctly. Had he just told me that he worked with another medical doctor for 5 years now and has no idea if she offers a diagnostic test to patients? My mind was blown. I then told him I was sorry I had wasted both his time and my own and I got up and walked out of the room. The front desk had my hopes up for a possible diagnosis, and answers on how to get well, by leading me on with an idea that they could diagnose me and possibly treat me, but not only was this not possible here, but the doctor who is a neurologist has no idea what they are doing for these patients. I walked out of there with tears in my eyes. I called back to the practice to ask to leave a message for the EMG doctor's nurse. I asked her if she could tell me if they did the small fiber neuropathy testing, and I was further insulted when the nurse called me back. Her exact words were: "No, she doesn't do that test here. It is usually done at an institution and if you are calling here for pain medicine, you'll need to go back to see the other doctor you saw the first time here, she won't fill pain medications." I was literally stunned. What had given her any idea I wanted pain pills? It was not in the discussion at all. I reiterated to her that I wanted to be VERY clear. I am not seeking pain pills. I am a seeking a diagnosis and help getting worked up so that I can get better and I wouldn't advise my worst enemy to see that other doctor. I am seeking a diagnosis for my severe pain, so that we can know if I need IV immunoglobulins or some other breaking treatment, I have read is being offered in other centers to long COVID patients with similar symptoms, but I never asked anyone for pain medication. Neurology was clearly a bust, at least in the community. Perhaps a neurologist at VCU Medical Center will know more? read more