My name is Michele, I live in Clearwater, FL. I was diagnosed with AS within the past year. It took about 15 years for me to be diagnosed. I never told a doctor that my lower back hurt so much. In fact I didn’t tell anyone really. In 1999 I was diagnosed with Fibromyalgia. Years went by and I started having problems with my feet, pain and swelling and I still didn’t really say anything. Finally 4 years ago the pain and inflammation manifested itself into my hands. I could work with pain in my back, I could work with pain in my feet, but I couldn’t work with the pain and inflammation in my hands. My hands were the tipping point. I finally went to a doctor, in fact, many doctors. But, I still didn’t mention the pain in my lower back and now hips, just my hands and feet. First I was diagnosed with RA, that was proven incorrect. Then I was diagnosed with neuropathy, that was proven incorrect. I finally moved back home to the Clearwater area and went to see the doctors at The Diagnostic Clinic. The rheumatologist, Dr Youngblood, asked me about pain in my back and I said well, yeah I’ve had pain there for about 15 years, I don’t even like it touched with a feather. I’ve had x-rays and MRI’s since then. I do not even have Fibromyalgia. I have finally, and hopefully, been correctly diagnosed as AS with ensopathy. The ensopathy is easily confused with fibro. I am now on disability. From what I understand AS takes an average of 11 years to be diagnosed, and only 6% of women are diagnosed correctly the first time. Who knows, if I had gone to a doctor for my lower back a long time ago I may still be able to work, but now the damage is done and it’s too late. I hope people learn from me and tell their doctor’s everything because you never know what might make a difference in obtaining a correct diagnosis.
Clearwater, Florida United States of America