Have you ever been challenged about your RA when speaking with a new doctor? Has that ever made you feel so small and insignificant? I am feeling that way right now. I am feeling a flood of emotions. Back in December I found out that my rheumatologist was moving and I was being referred to a new doctor. To say I was devastated was an understatement. I had found Dr. H after being treated like my symptoms weren't real from a different doctor. Dr. H made me feel comfortable and never made me question myself or my issues. She gave me confidence to say exactly how I was feeling because I knew that she believed me.
After Dr. H moved, I saw Dr. K (two times and I was unhappy both times). I had told Dr. K that I could tell Rinvoq was working. It might not have gotten rid of all my little issues but it definitely is making a difference, I could tell! And instead of being happy that it was working, he was confused that I was still having "little issues". He suggested that having issues in only one joint at a time is not RA. He said I should go off all my medication so he could give me a "true diagnosis". I was shocked and dismayed that it felt like everything I was saying to him was just not valid. Stating that tendons and soft tissues are not affected by RA and that costochondritis also does not occur in patients with RA and that it doesn't help my situation that I am seronegative and have no inflammatory markers in my lab work. I became enraged! How could a rheumatologist not understand that RA is a systemic disease? Even though I was mad, I really felt sad and confused more than anything.
Friday I will be seeing a new rheumatologist, the one who has seen my mother for seronegative RA for over 20 years. And even though I know from her experience that he is a good, caring doctor, I am so nervous. I have never felt so confused about what my body experiences. After having a seronegative RA diagnosis for 7 years, for the first time I am questioning myself. I know I have morning stiffness, I get stiff sitting or lying down, and I know that most "normal" people don't experience pain in their jaw for several months at a time, I know "normal" people don't experience sternum pain so bad they can't get up, pain so bad that they can barely drive home, waking up every morning with swollen, hot, uncomfortable hands, the list goes on.
I am struggling mentally with the fact that I am once again going through the motions having to prove my symptoms to someone new. Of course my joint exams are looking good- its because the medication I am on is working and most importantly, just because they look and feel good one day does not mean that that is how it is on all days.
This has been weighing so heavily on my mind, I needed to get it out in the world to see if anyone can relate to this/ share their stories with doctors and how to overcome the mental struggle of feeling helpless and lost regarding your diagnosis?