A.S. Face 0154: Michele

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

8 Responses to “A.S. Face 0154: Michele”

  1. Thanks for sharing, I too live in Clearwater, Fl and am in the process of being diagnosed.
    I have had so much pain for many years.
    About two years ago my nephew was diagnosed with Juvenile A.S.
    So I had the blood test and it was positive, but I am not sure if my new
    Dr. will diagnose me with A.S.
    Take care

  2. Hi Michelle, thanks for your story! So many of us have traveled down the same path of mis-diagnosis, it amazes me. The years of silent suffering or wondering if we are too sensitive or if all the pain is just in our heads… It is so easy to look back and say we should have told our doctor this, or they should have noticed that. But, unfortunately, the truth is this disease is just not publicized enough for doctors or patients to think about it as the culprit. I hope and pray our experiences and this site will help others out there.

  3. Thank you for sharing your story! Many of us, myself included, have dealt with the frustrating process of being misdiagnosed and doctors scratching their heads trying to figure out what the problem is. While it is scary to hear that you have a chronic, incurable disease that may lead to immobility and organ involvement, it is a relief to be taken seriously and finally have an answer.

  4. Yes i am part of 1 percent with AS. I must have been very very bad in my past live any groups in are are thanks dave

  5. Dear Michele,
    Thank you so much for sharing you story with us.
    Sincerely Cookie

  6. Michelle: Thank you for sharing. Your story sounds a lot like mine. I was originally diagnosed with degenerative disc disorder (incorrectly) and just last year I was correctly diagnosed with AS. I have much damage done to my back as I believe that I have had AS for the past 30 years. My hands, fingers, and ankles are now involved, as well as my eyes. It is a nasty and painful disease, which I hope that with more knowledge, will receive more funding for us and future generations. Take care of yourself! Stephania

  7. Hi, I live in Clearwater as well. On 5/29/2012, I had my very first attack of Uveitis/Scleritis; the eye doctor said that I need it to see my primary doctor right away, so I did. Several tests were done and nothing. Everything came back negative. In the mean time another fare of Scleretis and a second pack of steroids. I went to a rheumatologist in Dunedin yesterday. More tests were ordered and xrays. He said that I might have AS, so I am kinda of waiting to see what the test will revel. In the mean time a 3rd fare of Scleritis. The pain in my back, hips, knees, ankles have increased. I am used to living in pain and no one understands. It is a very frustrating situation. I have been suffered from back pain from a long time, chest pains since I was 16 yrs (I am now 36). I just hope that I will get an answer to my symptoms and pains.

    There are a lot of people that don’t seem to understand this kind of condition and pain. The morning stiffness, the fatigue, the sleepless nights, etc. It is a horrible pain!

  8. Wow.Your story sounds exactly the same as mine.I had back pain for years and never really told anyone.People knew i had a bad back was all.It wasen’t untill i couldn’t move my neck anymore that i seen a doctor who sent me to a Rheumatologist,and i was diagnosed with Ankylosing Spondylitis.
    Ontario Canada

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