A.S. Face 0595: Lisa Marsh

I am Lisa Marsh, and I was just diagnosed TODAY 9-5-12 with Ankylosing Spondilitis.  I am a 37 year old wife and stay at home mom to a wonderful 5-yr old son.  This diagnosis has come as a complete shock to me and my family, but I have been telling all of my specialists for the last 2 years that I know my body, and I knew something more serious was wrong with me.

Since June 2010, I have been diagnosed with 7 herniated discs from my c-spine down to my l-spine.  I had to have an anterior cervical discectomy and fusion in March 2011 because two of the discs were pressing against my spinal cord.  All of my chronic pain for the last two years has always been attributed to my herniations.  I finally found an amazing pain management physician who actually listens to my when I talk about my pain, and he recommended last month that I should see a rheumatologist to find out if I have an underlying condition to explain my severe pain and debilitating fatigue.

I saw the rheumatologist on August 6, 2012 and he was almost positive that I had lupus based on my symptoms and physical examination.  He did a ton of labwork on me, and today was my follow up appointment for the results.  He was in shock that I did not have lupus, but that I had AS instead.  He is an excellent doctor, and spent about 30 minutes with me today.  He explained in detail what AS is, what I can expect, that there is no cure, how to manage my pain, he explained it all.

I was devastated by this diagnosis, but at the same time relief has set in that I finally have an answer to what is wrong with me.  I was not going crazy, I knew something was wrong with my body, but all the specialists I saw never wanted to look past the injuries in my spine.  I have the explanation why I hurt so bad all the time, why I am so fatigued every day, why I am always getting sick.  I know that I am just getting started with this disease, and I know I need to have a positive attitude or else AS will win.

I have a very supportive husband, an amazing 5-yr old son who always loves to help his mommy when I need it, and the rest of my family that will help me any way they can.  With their love and support behind me, I am going to make the changes I need to make in order to stand tall against AS.

Texas United States of America

4 Responses to “A.S. Face 0595: Lisa Marsh”

  1. I was diagnosed in June. one thing that has helped me is, I have a thankful list next to me which I keep adding to and that way I can keep focusing on the positive.
    Nobody wants to hear the “o woe is me” list”. You have joined a big club.

  2. You’re among freinds here Lisa. And since misery loves company…I just know we’re all going to be close (that was a joke). And it would also appear that when one “googles” Ankylosing Spondylitis… FACE’s pops up quickly!
    Now, everyone here remembers “what they were wearing” the day they got diagnosed. I can still see the doctor “writing Ankylosing spondylitis” down on a peace of paper after he told me (And after I told him “you better write that one down!). It was my Iriitis opthamologist.

    Now you’re gonna be introduced to lots of new medicines. The good news is they work. Not all of them will work for you, and it’s common to “search” for the one that will….so don’t give up or get frustrated if the first one, or the second don’t give you releif…cause there is one out there that will. You’ll never cure, but you will find alleviation. Mentally, Its time to start the transformation to “acceptance”…something I’m still transforming to 10 years later…BUT hey, I wished I would have accepted it a lot sooner. Accept it, or be frustrated by it. Thanks for your story Lisa! And thanks for the optimism…every face beams with optimism the rest of can feed on.

  3. So sorry to hear of your diagnosis. I, too, was diagnosed after it was discovered that I had herniations throughout almost my entire t-spine. I ended up having a thoracic discectomy in July 2011. It was a neurosurgeon I had gone to for a second opinion who first mentioned AS. I was only 29 at the time that I had seen him, and I asked him why someone at my age would have so many disc herniations. He explained that sometimes this can indicate AS. I went home and researched it and was shocked to read all of the symptoms, that so closely matched what I was experiencing. I ended up being diagnosed with AS on my first rheumy visit. Unfortunately, for me, the relief of finally having a diagnosis was short-lived. Things have progressed, over the past 9 months, much faster than I thought possible. I am now on a cocktail of Remicade and Methotrexate.

  4. Dear Lisa,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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