A.S. Face 1634: Katie Hunt

Face 1634

My name is Katie and I live in Colorado with my Husband and two young girls. I was diagnosed when I was 26 years old. In 2014, I woke up with nerve pain that traveled from my hip to my toes. I thought I had slept wrong and thought nothing more of it. But the nerve pain turned into foot drop and I began tripping over nothing and falling because my right foot was perpetually in a ‘dropped’ position and wouldn’t bend right to allow me to walk correctly. Still I thought this was a pinched nerve and only decided to schedule an appointment once the pain in my low back became severe enough that even sneezing would make me cry. I was first diagnosed with a pinched nerve and was told to take NSAIDs for the inflammation surrounding the nerve. But I still couldn’t walk well because my foot wouldn’t function properly. I asked for a referral to an Orthopedic Specialist, and, after my MRI, was told I have lesions in my sacroiliac joint and required a PET scan to rule out cancer. Alongside this, my new diagnosis was a herniated disc, foraminal stenosis, degenerative disc disease, and drop foot from an ‘unknown cause’. My PET scan was negative as was the EMG. It had been almost a year since the initial pain began and I was no closer to a diagnosis. I lived daily with lidocaine patches and my TENS unit. I was given an SI joint injection but found no relief. In between the constant follow up appointments with my PCP and the “what diagnosis can we look at now” appointments with my Orthopedic surgeon, I was still in tremendous pain and wore an SI belt daily. Due to the ongoing limp, I was diagnosed with Piriformis Syndrome and received an injection in the same location with no relief. My pain became so severe that I needed help getting dressed and getting out of bed. Multiple trips to the ER made me feel like I was crazy because no one knew what was wrong with me. Frustrated with my PCP, I requested a to change to a DO. In a conversation with my new doctor about a potential diagnosis, he said I could have Ankylosing Spondylitis but he hoped I didn’t because “that’d be a terrible diagnosis. ” My new doctor immediately requested lab work and I found out I was HLA-B27 positive. The latest MRI showed excessive, abnormal bone marrow swelling and sacroiliitis. I was then diagnosed with AS.
I immediately became angry and bitter and resentful. Towards everyone and everything. For two years I had this pain that I thought would subside with the right treatment. I never expected to have an auto-immune disease that would never go away, despite treatment. Some days I literally couldn’t get out of bed. Some days the fatigue was so bad I could barely stay awake through dinner. And every day, my pain was there. Each and every day, I felt like I had a knife in my hip that made it tremendously painful to walk, sit, and even sleep. And at 26 years old, I bought a cane.
I have decided against the use of biologics for the time being. I have two young kids and suppressing my immune system doesn’t quite make sense to me right now. So I began researching and studying everything about Ankylosing Spondylitis; from the systems it affects to inflammation reduction.
I currently take around 20 vitamins and supplements a day in an effort to combat each symptom of AS- from the low grade fever and fatigue and inflammation in my hips, to the nerve pain in my legs. I know that there is a possibility of me needing a wheelchair, or being permanently disabled. I understand that auto-immune diseases can be fatal and are at the very least life altering.
I still have trouble getting out of bed. I still need assistance getting dressed on bad days. The difference now is that my perspective has changed. I have learned that while I have an autoimmune disease, it doesn’t have me. And as hard as my body is fighting itself, I will fight harder. I have the unconditional love and support of my family: my children are exceptional and pray with and for me frequently. My husband is my foundation and I literally would not be standing without him. Above all, I have an amazing God who reminds me that I’m not fighting alone. None of us are.
“Your pain has a purpose”
-Philippians 1:29
My name is Katie Hunt and I am the Face of Ankylosing Spondylitis
Colorado, United States of America

9 Responses to “A.S. Face 1634: Katie Hunt”

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

  2. Hi Katie,
    You kind of had a similar experience as I have. It is important to get a you a diagnosis early on. As you go to different Dr’s they will all have their 2 cents. Don’t let them try to take you backwards. Changing Dr’s runs a risk of the Dr’s wanting to make you go through what you all ready went through. They may tell you that after the SI joints fuse it should quit hurting mine hasn’t. The best advice I can give you is to stay as active as you can while you’re young. Hopefully you can avoid heavier medication. I know I lost my only sons younger years because of AS and I will never be able to get those years back. I thoroughly believe AS stole that time from me and I can’t get it back /no do overs. That is what I find depressing along with I can’t do my house fix ups because of it.
    Oh with AS it is not recommended to ride horseback or 4 wheelers on rough roads.
    You are more suseptable to compression fx of the vertebrae.
    Good luck with all
    Randy 1619

    • Randy, I havent experienced different doctors trying to reverse opinions yet- but God knows I had enough give the wrong diagnosis the first time.I hear that staying active is helpful but I find it incredibly painful,even short walks with my kids. Different strokes, I guess. You can’t dwell on the what if’s,though. “You do not realize now what I am doing, but later you will understand.” John 13:7 Best of luck.

  3. Katie, I do agree that some meds may cause more problems . But have you seen a rheumatologist if the immune system isn’t controlled it attacks other vital organs Mine started attacking my red blood cells and I ended up with haemolytic anaemia . Just warning you but rheumatoid medication helps with pain alot I take methotrexate which without I would not be able to bend I get so stiff. I am not sure if you mentioned seeing a neurosurgeon but If they are saying don’t see anything they can do, what I learned Is they mean surgically yet, have they done a myelogram to find if the spinal cord is impenged. Also where you go for the injections ask for something more permanent their is a nerve stun they do that last 6mths are longer but you have to ask for it I found sorry to say but money is the root of all evil here. And something that last longer drs don’t want to do. Just one more thing I have been on the emprel injections and around lots of kids as I was a school bus driver and never got sick I believe my autoimmune system is so off that it just helps lower it to more normal levels. But with you being so young I feel so bad for you I was 42 when mine started after a fall down the steps of the bus. I also found out at that time I have hemochromatosis which is to much iron in my body a metabolism. disorder. But I thank God I got to raise my kids and they were all grown . And you are blessed with such a great family. I am alone and get really depressed sometimes about what it takes away from you. But God is their for me when I need him and I have great parents.God bless you Katie.

    • Debra, my rheumy and I have discussed several different options, but right now I am more interested in doing my own research such as long term antibiotic use (for Klebsiella related infections) or a possible tonsillectomy due to their T-cell involvement with the immune system. Once I’ve eliminated everything I can think of, I may try DMARDS or TNFs. I just haven’t gotten to the point where a suppressed immune system (and higher risk of lymphoma and leukemia) are worth it to me, despite the pain. I’m so very glad to hear they’ve worked well for you and love hearing biologic success stories, but they are terrifying to me. Maybe I’ll get there one day.

      Dont dwell on the negatives, because you’re giving AS control. We’re better than that ❤ God bless you ❤

  4. Katie, Very sorry to here you have such a nasty auto immune illness, however, I am very pleased to see you have such a great attitude towards it. Life does go on. I was not surprised to read this as my sister and I also have auto immune failures. As children, Georgia and I had measles, chicken pox, polio, mumps, and many unknown fevers and allergies. She suffers from Epstein Barr and I have SLE with anti-coagulant. Some doctors believe we developed adult polio syndrome, but some don’t agree it even exists. I believe your will to be the best you can on any even day with carry you a long way. With Gods help we can bear all things. Ephesians 6:24

    • I fought until I felt like giving up and was gently reminded “The LORD will fight for you; you need only to be still”- Exodus 14:14- & that’s what really matters.

  5. Have you looked into the AIP (Auto-immune paleo protocol) diet?

    • I’ve read a lot about diets and even looked into long term antibiotics but truly believe Klebsiella is not the root cause of my AS. I know it can be quite different for each person though.

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