As I was going over my calendar for the month, I realized the number of doctors’ appointments scheduled. All are specialists that either I need to see as a result of, or a preventative due to, my Ankylosing Spondylitis. After catching my breathe from adding up the various dollars in co-pays and lab bills ahead, I began to think about how many doctors it took before my official diagnosis of AS. I painfully wonder if they could of  just found that missing piece one day earlier could things have been different? Maybe not, but unfortunately I will always have that “what if” in the back of my mind.

I decided to make a list. Either my slight obsessive compulsive trait or just the fact that I’m more of a visual person, made me feel compelled to finally put it down on paper. I was taken back, if not amazed, that the list was so long. I had a moment of frustration. Why had nobody on this list ever thought of sending me to a Rheumy? Why were so few educated on Ankylosing Spondylitis? A lot of the healthcare professionals on the list were doctors I had seen, been sent away, and then sent back to again for another consultation. I was passed around like a deck of cards for years to only end up with a losing hand until now.

  1. Primary Care Physician
  2. Neurologist
  3. Urologist
  4. Gastroenterologist
  5. Cardiologist
  6. Dermatologist
  7. Psychologist
  8. Psychiatrist
  9. Nutritionist
  10. Physical Therapist
  11. Osteopath
  12. Oncologist/Hematologist
  13. Rheumatologist

After I finished, I realized that My Rheumy was “lucky 13”. I admit, I did laugh at the coincidence. Sometimes I feel the only way to keep from screaming is just to laugh. I look back at how many of these doctors sent me away with either the “you’re losing it” theory or just an honest, “we don’t know, we can’t help you” result. After reviewing my list some more and wondering why nobody caught it earlier, I began to feel a sense of gratitude for my diagnosis. My Rheumy saved me in more ways than he may ever realize. He gave me the confidence to become my biggest advocate. I had known something was wrong and refused to give up until I got an answer. A person can only mentally handle so many “wrong” answers and I was beginning to question myself until I met with him. It really does take a lot of wrong answers to find the right one.

I’m  even more aware now how important it is to spread awareness for Ankylosing Spondylitis. If more people were educated on the signs and symptoms of AS I may have saved myself and others years of frustration. With all of us getting the word out, we may be able to help others receive a diagnosis earlier. Together we can help set things straight!

3 Comments

  • Steffie Jo says:

    I lived the same fate as you did. In fact after so many different appointments and so many let down, I went for a whole year just taking pain meds and lyrica because I was so tired of doctors. Then I had a bone scan/contrast done to “prove” I wasn’t faking it and they found out I had A.S.

  • Barbara says:

    Please help! Could someone tell me where to go in USA for best doctor to give second opinon about AS. What hospital would have more knowledge about this disease. Am in dibilating pain and in bed most of time.
    Have heard Mayo MN as 15 rheumatologists. Aso John Hopkins is rated high but cannot get to real facts.

  • King says:

    By the way, my mother has a long-standing aummiotune condition psoriatic arthritis which is quite severe, and she has had it for over 20 years now. Many of her joints are deformed and she is in a lot of pain. Drugs haven’t been able to help her much, she has slowly deteriorated over the years. Now she has been following a primal lifestyle (as recommended by Mark Sisson) which also includes eliminating wheat and other grains, we both have been doing this for nearly 3 months, and my mother has seen some improvement in pain, but she has a long way to go, I am afraid, because she has had the disease for such a long time and it has wrecked her body so much. But I have hope for her and I am praying for her. I wish in time she can feel better.

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