I was diagnosed with AS after my last daughter was born in 1995, I was 28 years old. She was born with Down Syndrome and it was a shock. Which has turned into a blessing. Right after her birth, I was diagnosed with Hashimato’s Disease and shortly after that I woke one morning with my thumbs killing me. They felt as if I had been out in a snow storm and was in a warm house thawing out. I had always had some lower back pain, figured it was due to the “curve in my back” my mother always told me I had. She also had this ” curve”. They felt the upset of our daughter with her diagnosis and NICU stay for the first week and then another in the first month triggered it all into action.
I went to a rheumatologist found I was HLA B27 positive and diagnosed with AS. Tried various NSAID meds, all made me have chronic diarrhea or felt just out of it. Lodine worked for a while then gave me the worst intestinal pain. I gave up on the docs, took alfalfa and ibuprofen . Also, have fibro. Took Effexor for a while and it helped with all of it until weight gain. So, over all these years it has been Advil mostly if needed.
Moved to Virginia four years ago, decided to see a doctor here and was told I did not have AS, after all these years I would have fusing. Heard he was a quack, after the fact. Went to another doc, told me the same thing. Made me angry due to the fact woman progress differently than men and all cases are different.
I recently went back to try this again with a third doc her in Virginia, she says it is AS and I have been very lucky that there is no fusing. My SI joints are getting really bad. I have aortic insuff. uvuitis, and mostly all other possible symptoms. I am now getting bad hip issues and now the neck MRI shows a mess going on, have pain in every joint now. Hate meds, not thinking I am doing the biologic at all. Too scary. I have a special needs child to think of, can not imagine taking a med that will possibly give me cancer and or TB. Which is the worst of two evils, the AS or the meds that may give me something worse and or kill me? I will end this now, but I do know my food allergies and sensitivities really do affect the way I feel. Since my hysterectomy three years ago and being on bioidentical hormone replacement if they get out of whack, I am in severe pain and achy all over. Foods an hormones play a huge role in my joint pain.
Virgina United States of America