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How long did you experience symptoms before being diagnosed?

Many people have experienced symptoms of AS for quite some time before being diagnosed. Some were misdiagnosed, others dismissed as simple back pain. What was your experience like?

  1. Diagnosed at 31, complaining of back problems since I were in my young teens but because I had other health conditions they wasn't interested because they were more important, which is fair enough. But after they were resolved they used every excuse under the sun to dismis my back problems until uviatus shown up an I lost sight in my eye for 2 weeks...still took nearly 3 year to be taken seriously after the uviatus, countless physio appointments, MRI scans & X-Rays & my physio therapist finally demanding my rheumatology specialist see me again...one meeting and countless evidence I front of him and I got a diagnosis after he consulted other specialists...
    Entire process is draining.

    1. I am a new be at age 62 with years of health problems. The way my as was found. I had a total right knee replacement the the left the year before. The first night in hospital I started having shouting pain down my whole leg up to my neck. So they gave me a few son pills to get me through the night. So I had an x10 machine to exercise on but every time I would use it I could not walk and my back hurt. The surgeon did X-rays and said your knee is healed up. I said it feels like I can feel every screw bolt rod in both legs, by back hurts and my bottom is in pain. So he suggested I see a back specialist. So I went for a appointment and he decided to have an mri done. I did it right away but doctor was on vacation for two weeks. I went to follow up appointment that lasted all of ten minutes and he offered me shots into my spine. I am thinking are you crazy. He never looked at my back. The following week I showed my Rhymtholigist my report and she could not believe all the damage in my back. She could not believe I have another problem. So I just got my medication today to start injections of cosentyx. I hope I get some relief. I read every story people have written. It is all very scary. Thanks for your help.

      1. I had a fusion several years ago from Degenerative Disc Disease. There was incompetence in my aftercare and so I thought all of my problems were from it. I didn’t know any different until I was looking at my diagnosis on my paperwork one day and saw AS. Then I started researching it. Then I got depressed by what I found. So just this year i have found out it’s AS. After I found out I asked my pain management Dr to refer me to a rheumatologist. She still hasn’t done this. I go tomorrow for testing to see if nerve ablation will help with pain.

        1. Chuzzy, I am glad you are moving toward seeing a rheumatologist. I absolutely value my rheumatologist and if you find one you really connect with it can be a wonderful relationship.

          I hope your pain management doctor will be helpful with injections. I know many who find great comfort from a professional pain management doctor.

          Thank you for joining us and sharing your experiences. I hope you will keep us updated, as we are always interested in how things are going.

          Rick (Site Moderator)

      2. Hey Anthony, thank you for asking. I've actually been pretty bad for a few years. All my medications made me sick and I've been trying to cope. 8/10 pain has become my baseline.

        1. Coping with 8/10 pain seems nearly impossible, especially when medicaitons are making you sick. I'm sorry to hear you've been dealing with it for so long. Have you found any coping mechanisms that help you? -Anthony (Team Member)

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