I woke up today and realized I couldn’t move my legs. I waited for a while before I got out of bed and hobbled over to take my medicine. Usually within a half hour all of the burning in my legs has subsided, but this morning it was a no go. I realized when I was pulling multiple bottles of pills out of my strongbox, that I couldn’t see the labels very well, and my head felt funny. It feels like my brain is swelling up and I have a new itchy rash all over my body. Chuck called my rheumy who said it didn’t sound connected to what he was treating me for, so I should call my PCP. How can swelling in your head and a rash not go hand in hand with autoimmunity? It could be CNS involvement. So I did what any sane woman would do, I cried. I am in between PCP’s and will be seeing a new one tomorrow for a physical. I decided that I wasn’t going to die and we’ll see what she says tomorrow. Have you ever felt completely abandoned by your medical professionals in times of crisis?
Yes, I have and know how frustrating it can be. Mine was with a dr that was filling in for my regular dr who was on maternity leave. She misdiagnosed me so bad I thought I was going to die. One day I called for an appointment and was given the dr who was on call there that day. She was wonderful and sent me on the right road with the right diagnoses.