A.S. Face 1396: Melody Fischbacher
I was 35 when I was diagnosed with AS. I had had a high SED Rate, CRP, and lots of back pain. I had started having severe pain and issues when I was 31 and pregnant with my second son. I had days when I couldn’t walk, my hips and lower back hurt horribly. Shortly after his birth, I had my first MRI, which showed that at the minimum I had a spondylitis of some sort. A short 4 years later, I finally got my GP to refer me on to a specialist. That specialist was a Rheumatologist who was the top in his field at the time. He did every test imaginable but never gave up which most doctors did. He did some x-rays right there at my first appointment along with all kinds of blood work including looking at the gene for AS. 3 weeks later, I was back in his office for results. Results again showed elevated levels of inflammation, but not the gene for AS, so that’s where the story begins. How could I have AS without the gene? He did some research because he said that he had 4 patients who all had the same symptoms that I was seeing him for. Turns out two had Lupus, and one had the AS gene and then there was me. He said although rare, you can have AS without the gene because it is ultimately a gene mutation. He said it has to start somewhere. To be sure though, he requested another MRI, of which I have had another one every year since. Since the first MRI to the one that I just had done in June, the damage from the inflammation to the SI Joints and the hip joints is quite severe. In fact, I have been told that if I don’t get the inflammation under control that I will be wheelchair bound in less than 5 years. I have been on and off of different meds since I was little. I went for immune therapy from the time that I was just a baby. By the time I was 18, I was taking a combination of anti-inflammatories and muscle relaxants. At the age of 35 I was so inflamed that my left SI joint is already fused to the pelvis. I have been on what seems like every anti-inflammatory out there. I have done the methotrexate but had suck a reaction to it, that they stopped that. Then I found Humira. Humira worked great until I got pneumonia last year. I was sick for 6 months—no joking. Since then the Rheumy has pulled Humira and switched to Enbrel. It just doesn’t work the same and I get no relief. So now, I am told my options are SI Joint Injections and a possible surgery to try to slow down the damage to the hips. My lower spine shows spurs on each vertebra from the mid-back down. There is not a day that goes by that I am not in pain. It affects everything—every system—My GI track is messed up, my inflammation levels skyrocketing, and just recently I have been diagnosed with depression which they attributed to having a chronic disorder because of the pain that I am in constantly. My options are limited for treatment because I am also so allergic to so many things. It makes this battle even more difficult to treat.
Melody Fischbacher, age 41
Des Moines, Iowa, United States of America