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Brianne’s Story (Ankylosing Spondylitis)

Blue RibbonMy story begins about a year ago, the start of my sophomore year of high school. I had recently gotten the first of three Gardasil shots (which I never got the last of, due to getting sick and fear of it being caused from the shot) when I started developing these terrible migraines. My head felt like it was going to explode from the pain and pressure. After multiple trips to the emergency room and an appointment or two with a neurologist, they told me it was just migraines and gave me medication. The medicine I was given, sumatriptan or Imitrex, did nothing, if not making me feel worse. I was then prescribed Treximet, and sadly, I had the same results. Eventually, my neurologist prescribed me Fiorcet, which was what the ER doctor had also given me. My headaches died down immensely, and everything seemed to be be getting better.

Around Halloween, my heart started acting up and would continue to from this time on. I missed the rest of my sophomore year. My blood pressure would be extremely low, yet my pulse would be ridiculously high. This brought a ton of fear to my family and me, due to the fact that my older sister’s heart failed and was only working at 9% when she was 15. Thankfully, she is healthy (mostly) and okay now. After another trip to the emergency room, they told me it was all in my head and that I was in need of psychiatric help. That hurt my feelings more than anything. I felt as if I would never feel better, as it seemed no doctors believed me. They had me spend Thanksgiving wearing a 24-hour heart monitor. Nothing showed. I started to believe maybe it was all in my head somehow. I got very depressed and discouraged.

My mom decided to do some research of her own online. Ankylosing Spondylitis popped right up. My older sister had previously been diagnosed with this as well, but she was not as symptomatic as I am. I went to a rheumatologist, and he tested me for AS through a blood test, an X-Ray, and an MRI. He told me, although my bones were not yet fusing, he truly believed I was positive for AS. Finally, some answers! My mom again did research and found that all of my previous symptoms could, in fact, be AS related.

But wait, there was more. In my MRI, they had found that I had a herniated L5-S1, along with signs of degenerative disc disease. Due to that, I had gotten an MRI of my full Lombard spine. My doctor asked when I had fallen off of the roof because my back was so bad. Also, there was severe damage to my left nerve root, which could also explain it all, since the majority of my pain and symptoms were on my left side. Pain medication, Celebrex, Meloxicam, etc. I felt like a human pharmacy. After I didn’t get much better from physical therapy and medication, I got my first cortisone injection in my L5-S1. I felt amazing for a week. After that, the pain slowly returned, and a month later I got my second one. This injection didn’t do anything. My mom decided to make me an appointment with a neurosurgeon at the University of Chicago to see if surgery could help my situation at all. The doctor told me he believed the main source of my problems was Sacroiliac Joint Disfunction, both good and bad news. Good because we may have more answers, bad because we may have another problem. He suggested I get another cortisone injection, but this time in my SI joint. If this didn’t help, I would most likely need surgery to shave the bulging disc. The injection helped a great deal, and my pain has subsided a great deal, but it is still very present. Today, I had an appointment with my rheumatologist, who found an ulcer on my scalp, so now I am being diagnosed with psoriatic arthritis and being prescribed Humira. Being only 16, I know my journey is far from over. I can do nothing but hope for the best and try to remain positive through it all. Wish me luck!

Brianne
Illinois
Submitted 10/14/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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6 comments

  1. I understand, being diagnosed when I was nine with Rheumatoid Arthritis, it was so hard. I wanted to just be normal like my friends. It’s so devastating when the Doctor’s make terrible statements like “you need to see a psychiatrist!!” Been there, done that. Being ill followed me through out my life. Because it was an autoimmune disease I did get remissions, (YAY). But, some of my most important memories I missed because of some stupid albeit life threatening reasons sitting in an ICU.
    As an adult I have been diagnosed with my RA only this time it brought Lupus, Pulmonary Hypertension, Autoimmune hives,Hashimoto’s Hypothyroid, Adrenal insufficiency and Ankylosing Spondylitis. My mom had the same illnesses. The AS affected us with swelling of our rib cage ie: Costochondritis only so severe my heart didn’t have room to beat!! I was 16 🙁 The pain from AS began in my lower back and became so severe I saw an Orthopedic convinced I broke something. But, I had severe inflammation at the L5-S1. I’ve been on Plaquenil, and Humira since 2009. This gave me my life back. I’m in a LOT of pain, but with the Humira/Plaquenil I can function. And, on my last MRI there wasn’t any visible swelling which means my AS is under control!
    It sounds like you have a great attitude which I believe is extremely important! You hang in there, and know that many of us started at your age, and here we are, many years later! I have three amazing children, I can’t work as a Paramedic like I’d always done up until my RA flared again. I cried for weeks. I had no idea who I was.. I was a MEDIC, and a mom, wife, friend etc.I mourned the death of that side of myself. I couldn’t work. what was I going to do ?
    I was allergic to all bath products.. UHHG Zest soap was all I could use. One day my best friend suggested I try making glycerin soap. I did for my son’s Halloween party.. I fell in love!! I wasn’t allergic to it. I studied, took online courses for retail and everything about natural bath and body products.. and Opened my own business. Now I can use every fun bath treat there is, it was the chemicals I was allergic too!! I make soy candles, and some jewelry *which is really hard for me, I usually get my friend to do it* I run my business as best I can and have tons of people who love my products.And, a great support system in my daughter and friends. I only tell you this so you will understand that if you get knocked down from where you wanted or what you planned. Sit there, and find something that you CAN DO!
    Never get to the point you don’t plan, because “you might feel bad that day” just plan it! These illnesses are so unpredictable, never let them make you stop planning trips, or events. Anyone who loves you will understand if you are too ill to go, and the ones who don’t .. well they just don’t matter 🙂

    Ok sorry, I can just relate to you so much as a 16 year old girl going through your trials.. I’m off my soap box now!! Keep up the good fight!

    • Thank you so much! This brought tears to my eyes. I’ve lost so many friends from being sick and it’s been so rough. But having the few that stuck by me really gets me through a lot. Thank you again for sharing your story with me, I hope one day I can get to the point you are at in your life now! I wish you & your family the best, and I hope you continue to keep on feeling better & better!

  2. I was diagnosed with AS at the age of 28. I was to the point where my feet wouldn’t move like they were suppose to. I had to crawl up and downstairs, my family thought I was nuts. I finally went to see the Dr and multiple visits and testing later is when they found it. I had been misdiagnosed when I was younger, I was told I had osgood schlatter. I was so active in sports and gymnastics that I didn’t have any other symptoms than my knees hurting. Until I had gotten older and only played one sport but worked 2 jobs so it started to take a toll on me. I can tell you that humira was the best drug that I have had that had worked for me. Up until recently I have discovered that the Drs are right with telling you to do morning stretches. I am off all drugs as I am fighting breast cancer and the stretches do help. I have also been told the water aerobics also helps, I am afraid of water so I have not tried this just yet. 🙂 I do want to thank you for posting your story because being off my meds I have recently have been experiencing migraines and have never thought of it being my AS.
    Continue to be strong and know we are fighting with you!! Take care.

  3. Thank you all for sharing your stories! I am still “unidentified” with AS but I know that’s what it is. I am hoping to get another MRI in February due to that fact that pain is getting worse.I was diagnosed at 33 but have had flares up my whole life and never really understood what it was. At first the doctors told me the pain was due to a bulging disk and I have degenerative disk disease. Not to long after that my rheumatologist told me it was probably AS. I try to pretend it doesn’t hurt but it does. I feel like people label me as “lazy” because they can’t see what is wrong with me but I am not ok and hide my pain. I had to mourn the lose of my athletic self. I ran 3 half marathons and had done 2 triathlons. No one seemed to understand how upsetting it was to be told that I would never again be able to run again. I am inspired by all of you and feeling better knowing that I have found people who understand what I am going through. Thank you!!

    • I’m sorry I’m just seeing these last two comments! But, yes, having people think I’m lazy is the worst thing in my life, too. My mom seems to get it, but my sisters really don’t. If we get into an argument about anything, they use the fact that I don’t do much anymore against me & it hurts my feelings. I’m not a lazy person, I’m just either in immense pain, or so tired I have no motivation to do anything. I used to be a three sport athlete & now I’m down to none. I try to exercise to make myself feel better, but with the herniated discs & arthritis I get practically no effect since it hurts with those. Since stopping sports & being on all this medicine, I’ve gained weight. About 30lbs. I don’t hate my body or anything, it’s just upsetting and adds more to the fact that I feel so lazy.
      The Humira has helped me in some aspects of my life, but others it’s brought me down. I’m very exhausted a lot of the time, and for a few days after my shot I just feel wiped out. The pain is less frequent, but it’s still there & sometimes is more intense. My rheumatologist keeps saying “give it three more months.” I don’t know if I should switch to Enbrel or not. When I asked my dr, he said he didnt want me to switch because he would have to keep treating me then. What a great doctor! I’m going to a new rheumatologist today to get away from that one. He’s done practically nothing to help me, and he comments on my physical appearance along with my sister’s negatively very often. He commented on her weight & the gap I have in my teeth. Horrible.
      Anyways, I’m still going through so much but I guess you can say there’s been slight improvement. A problem I’ve had a lot is trouble concentrating. I don’t know if that’s from trouble sleeping or something different all together. Adderall has been brought up and I’m wondering if anyone had any idea on if that’ll help me or not.
      Thank you all again for the inspiring words & stories. Things can only go up!

  4. Debra LeCompte (@morecowgirl)

    I have had AS since I was 14, had every one of the symptoms, suffered unbelievable pain in my life… I am 63 now, and I wasn’t diagnosed until I was 58… It was an ophthalmologist who first told me I had it. The blood markers were not even known when I spent 10 years looking for what was wrong, why my hip hurt so bad that sometimes I limped so terribly I could barely walk. I had the same primary physician for 30 years, and it never occurred to him… He is very good physician too. I should know, I was a nurse for 27 years, and I missed it to. Go to roadback.org. Also Addrerall prescribed for my ADD is the best treatment I have ever found for AS… I have found some research (peer reviewed,) which gives credibility to my theory, but it is so new it isn’t a routine medication prescribed for AS.

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