A.S. Face 0184: Dan B.

Originally diagnosed 32 years ago I think.  I say “I think” because I was 13 or 14 at that time, and to be honest I don’t really remember much.   I couldn’t walk due to terrible pain in back and hips.  The doctor put me on crutches for 2 weeks and mentioned arthritis and possibility of rib cage fusing together, I think.

Pain has always been a part of my life since that time, the level of discomfort and how to manage/deal with it has caused various issues.  From complete denial and the “toughen up” mentality, to self medication to extreme levels at times (extremely dangerous and not advisable). I have always tried to stay active, from playing sports in high school, to bowling and golf for the past 30 years.

I began to experience more than normal pain in the spring of 2010 during a bowling tournament.  I figured because I am getting older I was experiencing normal age related aches and pains. The pain not only continued but began to increase in intensity into golf season, greatly affecting my ability to enjoy the sport.   From golfing 2-3 times a week in years past, to a total of golfing 3 times all season last year.

With the new bowling season to start in Sept of 2011, I realized I physically could not bowl in a league since I was 6 years old.  With serious encouragement from my wife (understatement!), I went to my primary doctor to discuss my situation.  It had been 6 years since I went to him specifically for back pain issues.  Due to length of time, he decided to start with new x-rays to see what was going on.

“Thoracic kyphosis is accentuated measured at approximately 70 degrees.”.

Hmmm, that doesn’t sound good, maybe page two of the report will be better…. “Osteophyte formation is present at L1-L2, L2-L3 and L4-L5, anterior wedging of the L1, ankylosis of the sacroiliac joints”  as well as “findings are worse than the description report of the study of 2005”.   Well needless to say off to a pain management clinic I go.  8 cortisone shots later, an appointment with a physical therapist and a rheumatologist and it appears that I am starting  what appears to be the beginning of my new life. January 11, 2012 I am told I am HLA-B27 positive and officially diagnosed with ankylosing spondylitis.  I am hopeful to begin Enbrol very soon (waiting on final insurance approval).  The extreme exhaustion, lack of appetite, 25 lb weight loss in the past 6 months and inability to sleep more than 1 1/2 hours at a stretch is becoming rather tiresome.

I am currently trying to continue to work, however it is becoming very difficult especially with the “bad” days that are becoming more frequent lately. I am hoping to experience some relief once I start the new medication, although I know it is not a magic bullet.  Between new medication, improved exercise and greater awareness of AS, I am looking forward to the possibly managing this disease and stop letting it control me.

Dan B

Michigan, United States of America


8 Responses to “A.S. Face 0184: Dan B.”

  1. Thank you for sharing your story, Dan. Enbrel worked wonders for me, so I really hope it is as helpful for you! I know how frustrating it is to have to wait for the insurance company’s desicion on a medication that could potentially give you the ability to enjoy your favorite hobbies again. When I was diagnosed as a teenager my favorite thing in the world was to enjoy the amazing local music scene my hometown of Austin loves to boast about. Unfortunately the pain from my AS made it very hard to last an entire concert. I would sit in the back until my favorite band of whomever was playing that night came on. After their set I would find myself another seat, watching my friends from afar as they danced or “moshed” (as was such the thing back then), feeling down about not being able to join in.
    Starting Enbrel six months later changed all that. After a month or two of starting the shots I was able to enjoy a whole show, dancing and singing with my friends (I was never a “mosher”)!
    Unfortunately I am uninsured now so I have been off Enbrel since the age of twenty (four years), and starting to really feel the progression of damage in my spine and hips.
    I really, really hope you get the approval and it works just as well for you! Please, keep us posted!

    • Thank you for responding and sharing your results from Embrel. I am sorry to hear your situation has changed. I hope more positive changes come your way very soon. I really appreciate the time you took to respond and will update my post as changes occur, both good or not so good.
      Thanks!
      Dan

  2. Hi Dan,
    I know the feeling of loss when it comes to things you love doing,I am not able to play my guitar after more than 32 years of semi pro activity.Enbrel didn’t work for me,but I have read alot of accounts where it did very well for a number of people,and I hope it works for you!

    • Paul,
      Thank you for your encouragement. I am sorry you can no longer play guitar. I hope you have found a treatment that works for you. The more I read this page and other message boards about AS it makes me hopeful. A lot of people are surffering, having to stop doing actives they love, doesnt matter if it is work or hobbies. But the underlying message overall appears that most people are compassionate, helpful and offer hope.
      Thanks again for responding to my story.
      Dan

  3. Dear Dan.

    Thank you for sharing your story with us. I hope that the medications will bring you great relief. It is difficult giving up things you enjoy, but the key is to finding new things that bring you joy. Good luck to you.
    Sincerely Cookie

    • Thanks Cookie for allowing me to be a part of this site!
      Dan

      • Dan,
        My pleasure thank you for the honor of being a part of this. I can’t wait to see what a year brings.. Almost 200 faces in 3 months and over 70,000 views!

        Thank you!

        sincerely cookie

  4. Thank you dan…its great reading how other people cope with this insidious disease! AS sucks!!!

    Matt
    South Wales

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