A.S. Face 0458: Arne

Hello,My name is Arne.

I got AS in 1991 when i was 21.It took almost 8 years to be diagnosed and prescribed Napraxon.

Most of the pain was in the spine and left hip.My left thigh muscle was wasting away and there were times it hurt to much to walk.It also hurt real bad if i sneezed or laughed or even if some one touched me.

The good news is for the last few years I’ve been feeling so much better.Gaining strength,standing straighter and doing so many things that i once thought i’d never do again.

It is my hope that this story will bring some hope to a fellow AS sufferer.Maybe some times the pain does go away.

One thing that bothers me is this super long time most of us wait to get diagnosed.I can’t see any reason why this has to be.

Arne   BC Canada

8 Responses to “A.S. Face 0458: Arne”

  1. Thank you for your story – your the only person who has ever mentioned thigh pain – Ive been talking to my rhuemy about this pain and he is so perplexed! Cant understand it or doesnt know what to do – I told him I feel like I have a metal rod in my thigh – interesting! Thank you for sharing!!

  2. My first trip to the chiropractor was when I was 11 years old..Had problems off and on since then. I was thold that I threw my back out, or I had scroliosis, or you “blew your back ou”….whatever that means…or told I was “locked up” …Arthritis…The list goes on and on.. So about 20 years later after all these misdiagnosis’s and countless trips to chiro, physio…Copious amounts pain killers, anti inflamitories and and a couple sets of quartizone injections and some nerve block.. My physio therapist (God bless his soul)..At one of my many visits, said “Ang this is crazy, your back is a TRAINWRECK…Im not even sure what to do to give you any relief”..He wrote ANKYLOSING SPONDYLITIS on a little peice of paper and asked my doctor to some blood work to check. He said he wasnt sure what else it would be..I went home that night and did a little research on AS…(I had never even heard of it before that day) I was h orrified when I found out what it was and what life with AS would be..My test came back positive for HLA-B27 and I had Ankylosing Spondylitis..:*(
    As sad as I was at the result of my blood work, I was so releived to finally have an answer….20 years later..So yes I ask that same question Arne..How come everyone with AS goes sooooooo long without a diagnosis?…Its not a common disease, but as I read and learn more..its not even that rare.. I seen spine SPECIALISTS…How come they never asked to run the test? WHY did I have to wait 20 YEARS for a physio therapist to GUESS? Its insain…Anyway im face 424…Welcome to the family (ps we love you Cookie)

  3. Jeania, HOPE you’re still reading FACE’s. Third time’s a charm. “it is my HOPE that this story will bring some HOPE to a fellow AS sufferer.” Thanks for sharing Arne!

    “suffering produces endurance, and endurance produces character, and character produces HOPE, and hope does not disappoint us…” thanks for sharing Paul.

  4. This bothers me too. I am glad your strength is returning.

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

  6. Arne: I agree with you–why does it take so long to be diagnosed? I have had these symptoms for three decades, and just last year was diagnosed with A.S. It was a relief, but frightening at the same time. I am glad you are feeling a bit better now. Welcome to the group! Stephania #445

  7. Arne: I agree with you–it should not take so long to be diagnosed with this disease. I believe I have had this since my late teens, and I was finally, last year at age 49, diagnosed. It was a relief, but also I wonder why it took so long. Perhaps I would be in better condition now if I were diagnosed earlier! Thanks for sharing your story! Stephania #445

  8. Thanks for sharing your story. Elizabeth face 40

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