Frustration is the name of the game. I saw my Rheumatologist yesterday and I have come home very unhappy with the outcome of the appointment. My first appointment was an assessment and tests. At that appointment she diagnosed me with Fibromyalgia. My second appointment was a result of my test results and I was called in and diagnosed with Rheumatoid Arthritis after I had a High Anti-CCP in my blood work and had developed numerous rheumatoid nodules the week before. I was started on Plaquinel and Methotrexate and a follow up appointment was scheduled for 2 months later. So yesterday I went to my follow up appointment.
I am sad to say that she was more focused on the paperwork in my file than listening to me. I asked questions, pointed out deformities in my feet and the difficulties I have walking as a result of toes that curl under, a big toe that is on a new angle and lays across the toe next to it, the swelling on the balls of my feet making it feel like walking on marbles and the burning in my feet when I stand more than 5 minutes. I have had no improvement in the past two months since I started medication. She completely ignored my feet, assessed my hands, charted and offered a shot in my hip (which I had complained of last time but hadn't gotten around to this time). While giving me a shot in my hip (no idea what it was) I was mentioning the itchy joints that I have, the fact that my hands won't straighten and are in a constant bent position. My bones near affected joints appear to have exploded and are 2-3x the normal size...she continued to ignor everything I said and declared I should go to a pain clinic because my Fibro was out of control, my RA is fine because there is no visible swelling so my meds will stay the same, because of joint and muscle pain she has declared I have amplified pain syndrome.
I come home to research amplified pain syndrome which declared that while the cause of pain is gone the central nervous system retains memory of pain where there is no cause...HOW ON EARTH CAN THERE BE NO CAUSE OF PAIN WITH A DX of RA and FIBROMYALGIA THAT HAS CAUSED DEFORMITY AND DISABILITY???? She see me back in 4 months at which time they will ultrasound to see if there is internal swelling and I should have an MRI of my hands and feet in that time. They have flagged my file because in 2 months they have managed to not yet book me an appointment. I am extremely frustrated and upset with all of this. I am seeing a top Doctor's at Mount Sinani Hospital in Toronto. Jay Keystone heads up this clinic (not my Dr though) and it is supposed to be one of the top in Canada and IS the TOP Rheumatology and Autoimmune Clinic in the province!!
My family Dr, two weeks ago told me that he could see more changes in my hands and feet since my x-rays (which would have been two weeks after the x-rays were completed) and that he really hoped she started treatment with a Biologic when I saw her as that is my best hope to stop the damage. What on earth am I going to do? Do I ask my family Dr. to make a new referral for a second opinion or do I stick this out for another appointment or two and see if this was just an off day for her?? I just don't want more damage to occur because she is not sure about what to do with me not being a text book RA patient! I had so much more to talk to her about but since she was ignoring me I gave up...Very frustrated at the moment.
Okay rant over...any suggestions would be greatly appreciated!!
© 2011 Rhonda