My name is Tanya Amstutz, I’m 34 and I was just recently diagnosed after struggling for 2 years.
My story begins with the conception of me and my husbands first child.
2 months into my pregnancy, I woke up with excoriating pain in my left butt cheek. I couldn’t bend my leg or weight bear. I was so scared because the pain literally came out of no where, I had no prior problem and no accident had occurred. My husband took me to the emergency room and of course since I was pregnant, no one could do anything and the recommended seeing a neurologist and to contact my OBGYN.
While I waited for my neurologist appt, I saw my OBGYN who assured me that this was all pregnancy related. Too much relaxin being produced was causing my SI joint to spread and that it would go away after delivery.
I saw the neurologist who told me the same thing. She thought it was the baby pushing on my sciatic nerve which I thought was insane because at that point, he was no bigger than a walnut. She recommended PT until I delivered and then told me if 3 months after I had my son I was still in pain to come back.
2nd trimester rolled around and I was in so much pain I couldn’t walk or drive, I couldn’t sit for very long and had to quite my job. I went to PT every week. Tried dry needling and stretches but nothing worked and I just got worse. Besides the pain in my butt cheek, the pregnancy was great and I gave birth to a beautiful little red headed son in 2013. Unfortunately, I had back labor and due to all my pain and SI joint issues they gave me an epidural higher up and it still worked, thank goodness.
After I had my son, I continued with PT, got acupuncture, massage therapy and nothing was working. In fact it was getting worse.
I went to the neurologist again and had a MRI which showed a massive amount of inflammation in my left SI joint. She said, oh well, you have arthritis and there is nothing we can do but send you to pain management. I kept saying, how could I have arthritis at 32 with no prior issues. This just came out of no where.
So, I went to pain management while still doing PT…we are now over a year of weekly PT. We tried steroid injections and got me on meds. I had tried a bunch of anti inflammatories that didn’t work and just made me sick. Now, at this point, my pain spread from the left SI joint to my right SI joint and up my lower back. So, nerve blocks here we come and after that a full RF bilaterally L5-S1.
I was still in terrible pain. I got a second MRI that showed the inflammation had spread into the right SI joint up into the facet joints of L5-S1.
I saw a spine specialist and they found nothing wrong. My GP ordered blood work, no inflammatory markers or indicators of lupus. At this point I am so frustrated. I can’t walk, play with my son, drive…it was horrible.
So I finally saw a rheumatologist. She drew blood and I came back positive for HLA-B27 and she said she thought I had AS and wanted to start me on biologics right away. She was very unfriendly and rude so I decided to get a second opinion.
I met with a rheumatologist who specializes in auto immune disorders, specifically AS. After reviewing all the notes from every doctor and all my MRIs and X-rays, he officially diagnosed me with AS and I’m due to start humeria this Friday.
To say the least, this freaked me out because I actually knew what this was. I studied forensic anthropology focusing on paleopathology and one of my skeletons had AS. I knew the potential damage of having this disease.
While I was waiting for my second opinion, I joined your support group and another so I could ask questions and vent to people who understand and it has helped me a lot…just knowing I’m not alone.
I’m terrified of what my future may hold especially since my pain and swelling as spread to my knees, thumbs and wrists but I’m trying to stay positive for my husband and son.
I just wanted to share my story and get an official Faces number and a bracelet so I can help spread awareness and show my support.
Colorado, United States of America
I wanted to let you all know that Tanya passed away on 05/17/2016