A.S. Face 1765: Robin Strickland

I’m Robin Strickland.  I am 52 years old, diagnosed at age 50.  I had belly issues my whole life , which i now know was IBD-C and not IBS.  After a hysterectomy in 1997, I immediately began to suffer sciatica issues.  Debilitating pain that took me to countless doctors visits, after hour clinics with only meds to make it thru that day.  In 2004 I had my first flare of uveitis. I saw the eye doctor for treatment with drops and over the next 10 years had several flares along the way. Our family joined karate about the same time, and although I didn’t think I would make it because of sciatica pain, it actually helped with all the stretching we did.  I made it thru to second degree black belt but quit bc the sparring was killing my neck.  I joined a gym and while I worked out I felt great but when I stopped, my body got angry , is the best way to describe it. All my doctor would say is you have Osteo arthritis , you are going to hurt.   As I approached 50, every day seemed worse than the day before. My neck killed me all day long, was told it was stress so I quit my job. My back was horrible. My elbows were hurting and I was seeing ortho for that.  I was taking Aleve and Tylenol like candy and it wasn’t doing anything.  I told my husband I was dying of something and when I’m dead y’all will figure it out. Finally a flare of uveitis caused flashes of light so I was sent to a Retinal specialist Dr John Couvillion who wanted to know why I kept having flares and asked if he could do blood work on me.  I said it was fine.  His nurse called a couple of days later and said “you tested positive for HLAB27 gene” . I said “ok and…” She said “oh you don’t do anything, it just proves you have an inflammatory condition”  ⚡️💥 I said “STOP right there, are you telling me the inflammation is in my body, not just my eye?”   She says “yea I’m surprised your back don’t hurt!”  😳 I said “are you kidding me?”  I said “thank you for your time but I’m about to bust this thing wide open”  I immediately googled HLAB27 diseases And alphabetically AS popped up first. I read it and said I knew it, I knew I had something, now I knew the name and needed doctors to back me up.  I called my chiro who has been seeing me for over 15 years and said “what do you think about this?”   He said be here tomorrow and we will do XRays.   Every time I saw him I always seemed to have a reason for my pain. OH we increased weight at gym, oh we worked in the yard all weekend, nothing that would have caused him to do X-rays.  The X-rays showed SI fusion and end plate bridging T12-L1.  He felt like we were on the right track.  I called my doctor who was out for the week, so I said I need to see someone today.  I saw my doctors son, who in my best description as I told him my story filled w bloodwork results and X-rays, was very quiet.  He left the room and came back and said “you are definitely on the right track, you need a rheumatologist asap and a spine specialist”  So that day I had 3 MRI’s and got to the rheumatologist he called that week and within 5 minutes of her hearing my case as I begged her to believe me, gently rested her hand on my arm and said ” you can stop talking, you without any doubt have AS and it’s very advanced.  You need Humira now .  She did a battery of blood work which further confirmed AS as my CRP was elevated.  Within 2 weeks of that fateful phone call, I had my first shot.  I am very thankful it has worked on my inflammation wonderfully but bc I went almost 20 years undiagnosed I have a lot of joint damage, so my pain and stiffness is still a daily battle.  I can’t sit long, I can’t stand long but I feel very lucky I’m ,even advanced, able to exercise and stretch daily to try to maintain my posture.  I’m sorry my story is a long one but it took a LOOOONNG time for me to get answers. I had never heard of it before but I sure know what it now.

Louisiana, United States of America

3 Responses to “A.S. Face 1765: Robin Strickland”

  1. Dear Robin,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. I am really glad you finally got answer!

  3. I am sorry it took you so long to find answers! It also took me about 10 years for a diagnosis, attending many doctors, ERs, going from one procedure to the next. I pray and hope most of all for a better awareness so that other people do not suffer 10+ years before receiving not only a diagnosis, but treatment. Wishing you all the best! Thank you for sharing.

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