Jacky

My name is Jacky, I’m 28 years old living with Ankylosing Spondylitis and I am a Spoonie. My symptoms first started when I was 24 with hip pain/stiffness, lower back pain, and swollen, inflamed joints in my hands. Because other members of my family had autoimmune diseases I thought that could be what i had and I was referred to a rheumatologist that diagnosed me with Ankylosing Spondylitis based on my symptoms, me being HLA-B27+, and a very, very small irregularity on the inside of my SI joint. He started me on Humira (after trying a couple other things) and that helped tremendously. Unfortunately, I had to leave his office a couple months later so the Humira supply ran dry and the pain came rushing back.

My PCP at the time did not believe I had AS and all of the rheumatologists she continued to send me to didn’t either. They all refused to even put in for an MRI to check for inflammation and just kept telling me that all my blood work looks good! Meanwhile, every x-ray is showing more and more disc degeneration, degenerative scoliosis, bone spurs, bulging discs and disc space narrowing. I was told several times it was “normal wear and tear”.
I found a new rheumatologist March 2016 that said he would finally hear me! He put in for the MRI and it showed that I definitively have Ankylosing Spondylitis down to my bone morrow! We tried steroids first- found out they alleviate pain, but cause psychosis, so that was rough!! Then biologics. Humira first, I was on it for a couple months and it didn’t work. I actually was feeling worse. Then the Remicade- I received only 3 or 4 infusions and with each one I got sicker and sicker. I experienced a wide array of symptoms including confusion, dizziness, memory loss, weight loss, and extreme pain that would come and go. He sent me for a brain MRI that he said read all clear, and many, many blood tests. Recently I found out that my Rheumatologist did not tell me I had a small cyst near my left front temporal lobe because he said “it won’t be an issue” and he also neglected to tell me that the initial MRI he did of my lower back/sacrum reads “scattered tarlov cysts throughout sacrum” and Tarlov Cyst Disease can be very serious and cause many symptoms.

Very recently I was also told that I may have POTS because of a near syncope episode I expierenced and I had an abnormal EKG. I’m not sure what is caused by what or if any of these things work that way, but managing all of it certainly has been difficult and I am so thankful for the support of my husband Eric, my family and the AS community!!

Being in pain all the time is extremely taxing on the body and mind. I want to live this free life of positivity and happiness, but on the days when you’re cemented to the bed it sure can be hard to find that light! I have severe anxiety and it’s proven to be difficult to not allow all of this to consume me. Everyday I fight to feel better and to find the answers. So often I want to give up, but I still have hope that there are brighter days waiting for me somewhere.


One Response to “Jacky”

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

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