A.S. Face 0427: Susan D.

My name is Susan D.  I am 48 years old and I have Ankylosing Spondylitis.

I have been married 20 years and have 2 daughters.  I experienced pretty good health until it was discovered I had a pituitary tumor.

I had a craniotomy in 2005 to remove the tumor.  I did fine with the surgery.  After the surgery my health went down hill.  First I started having migraines.  Didn’t have them before the surgery.  My doctors told me it had nothing to do with the surgery and that I probably had migraines before I just didn’t know it.  If I’d had a migraine before the surgery believe me I would have known it!

A few years later, I was diagnosed with Common Variable Immune Disorder.  This is a “primary” immune disorder that usually children get, not adults.  I was in my 40′s when I was diagnosed!  I get infusions every month of Intravenous Immunoglobulin (IVIG).  I will have this for the rest of my life.  I quit working at that time.  I was/am an RN.  I love being a nurse!  Don’t know what else I would do! The next 2 years were difficult.  I had “sinking spells” where I would have absolutely no energy and all I could do was sleep.

It kept happening so my PCP sent me to a Rheumatologist.  The rheumatologist drew lab work, x-rayed every part of my body.  He told me I had Fibromyalgia and he didn’t treat fibro patients.  My PCP would have to treat me.  He put me on Mobic, which did absolutely nothing.

A few months later, after a nurse from my insurance company suggested I see another Rheumatologist, I went to see the Rheumatologist that would diagnose me with Ankylosing Spondylitis.  She took one look at me and said “I don’t think you have Fibromyalgia.  Something else is going on.”  I was positive for the HLA-B27 gene.  There is no history of anyone in my family having AS before me.

They all had Osteoarthritis.  But truthfully, someone could have had it, it was just not diagnosed back then. Anyway, Ankylosing Spondylitis has taken away my ability to work as an RN.  I am currently trying to get on disability.  AS has taken away my ability to work, but I won’t let it take away anything else!  The worst part is that my daughter, at the young age of 16, was just diagnosed with Ankylosing Spondylitis. I am currently on Sulfasalazine, Gabapentin, NSAIDS, Tramadol, and Hydrocodone.  I have trouble sleeping and the flares really suck!!!  I exercise 3 times a week and try to maintain good posture.  I take it one day at a time and have lost 40lbs so far!  I try to keep busy gardening, canning food on my good days.  On my bad days, I sleep a lot.

I try to stay positive as that helps me more than any medication!  That’s my story.  Hope it helps someone to read it!

Susan D
Texas United States of America

4 Responses to “A.S. Face 0427: Susan D.”

  1. Susan,

    My brother was diagnosed a couple years ago after long battles w/ his doc also. He is still healthy & working. I finally got someone to believe me that I was exhausted & in pain all the time. I’ve had migraines since teen years. I was diagnosed with fibromyalgia recently. We had a grandmother that had autoimmune disorders, probably misdiagnosed. Out other one likely did too. At least we live now, and now 50 years ago.

    I’m sorry that you and your daughter are going through this. Not being able to practice as a nurse, and do what you love must be heart breaking. Remember, your daughter got her diagnosis young. She will have the benefit of treatments that you didn’t. And the understanding from her loving family. Do what you can. You are loved and cared for more than you realize.

    Mendy

    • Thank you both for your encouraging words! They mean so much!
      Peace & pain free days!!!
      Susan

  2. Dear Susan,
    Thank you so much for sharing your story with us. I wish you and your daughter the best of luck.
    Sincerely Cookie

  3. Susan,
    I have AS as well and I thought it was interesting that a pituitary tumor was your first problem. I am 34 and I have been in pain most of my life but after I had my son I was diagnosed with a pituitary tumor also. Mine does not require surgery just medication. Like you, things went downhill from there although I never would have associated it with the tumor. I was diagnosed with AS within 3 years of the tumor. I am now disabled and about to try the intrathecal pump for my pain. While I had signs of AS before the tumor they were not enough for anyone to be able to diagnose me. I wish there were more money for research because I have heard a lot of stories of AS patients with similar seemingly unrelated endocrine problems as well as problems with other systems as well. Good luck to you,
    Amanda

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