My AS story

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I was finally diagnosed with ANKYLOSING SPONDYLITIS in January 2009 after what I can only describe as an uphill battle both physically and emotionally. I am a mother of 5 children and had my first child at just 16 yrs of age. I had my 5 wonderful kids with hubby Ken within 10 yrs. I am a grandmother of two beautiful grandbabies. I had suffered pain for most of the time that I was pregnant. With my pains being explained as sciatiica due to pregnancy pressure. For years the pain gradually increased to the point that it was impacting on my ability to function as a mum and wife. For yrs I would cry during sex with my husband and he would feel terrible and so it affected our sexual relationship. I felt bad as a wife but couldn’t explain why the pain in my hips was so excruciatingly painful. I went to my GP several times and I was told I had a pinched nerve “Sciatica”. I tried physio to release it, which didn’t help. So i sought out Bowen Therapy from three different therapists over a long period of time. Nothing helped with my pain. I went back to my GP and he said take these inflammatories and come see me in two weeks. When I returned I was in more pain than ever so he referred me for an ultrasound of my hips as he thought I may have bursitis. My results showed no bursitits. GP then recommended I take 2 weeks leave from work and have complete rest to let the anti inflammatories do their job. NO SURPRISE but with complete rest i was in complete agony. I started to feel like nobody believed my pain. Dr sent me for a CT scan which showed up sacroilitiis on my SI joints…which my GP told me was just wear and tear from having 5 babies so close so young. So I went home feeling like there was no hope for me and nobody believed me. I continued to suffer a few months longer until I was unable to stand anymore without the aid of a wheelie walker…I put my feelings aside and went back to the GP for one more visit. He said this has been going on for so long?? I felt like saying “Are you serious” ? He referred me to an orthopaedic surgeon for review. This Dr took one look at my CT scan which was done months prior and made a call to the hospital and got me an appointment for the very next day for a BONE SCAN. I had the scan done at hospital and the radiographer said the hospital Dr would like to see you. He asked exactly where my pain was and when I would be seeing the specialist again? I told him next week. Well at the appointment he said i know whats wrong with you and there is help. We have to send you to another specialist called a rhuematologist. So three weeks later I was diagnosed with ANKYLOSING SPONDYLITIS !! It was the best day of my life,,,i was not crazy and i was in terrible pain and it was finally seen. I had to then undergo another test to qualify for treatment. The test had to show a minimun grading of 2 to qualify for the government to pay for my treatment. I was so scared…im told there is help BUT you may not get it if you don’t have enough destruction. Sadly my destruction was significant with fusion already taking place predominantly in my right SI and also in my left. I started on Humira which after 6 months didn’t help me. Then i went on Enbrel which helped very little. Then I was treated with new drug Simponi which sent my pain and CSR levels right back to where I started. I am now on remicade infusions every 6 weeks …I am still battling today to find the right balance to keep my pain at bay. I have regualr flares and have never been pain-free. My Facebook AS friends keep me going as well as my wonderfully supporting husband. This is my story and I hope that all of us AS sufferers will one day be cured with time and research…LOVE AND PAIN FREE SUPPORT Deb xxoo =)