8.31.2011

I may have a disease...

This is long, so you don't have to read it. 
But it is true. I may have Ankylosing Spondylitis. 
(Weird name I know.)

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Ankylosing Spondylitis: is a type of chronic inflammation of the spine and sacroiliac joints (low back where the bone directly above the tailbone meets the bones on either side of the upper buttocks). Some symptoms of ankylosing spondylitis are pain and stiffness in and around the spine area, and fatigue. There is no cure for this autoimmune disease but only treatments, such as physical therapy and exercise, and medications that can reduce the symptoms. More info at: Spondylitis Association of America

I went to the Rheumatologist on Monday, August 29, 2011 and got X-Rays on my SI joints (butt joints if you will) afterwards. I will probably find out today if I have this autoimmune disease so I am waiting to hear back from them.

If we want to get technical here, I have this rare gene HLA-B27 that is associated with Ankylosing Spondylitis (yep that is the name of the disease, kind of dumb if you ask me). My mom's aunt has this disease and gets bad eye infections often and has a lot of pain in her spine and back. It is a genetic disease. My mom has this gene and a few of my siblings do so it runs in the family. And I don't have Lupus and have a negative Rheumatoid factor whatever that means...so this is most likely!

If you have this disease you may get uveitis which is a really horrible eye infection. If you get uveitis, the eye infection, you may have this disease, but it is pretty rare.

Anyways, so I used to get weird inflammation eye infections often in high school where I would have to wear glasses for a few months and do steroid eye drops. I eventually had to get the one a day contacts (so throw away each day) because no other contacts would work with my eyes. They would just get infected.

While at BYU, I got a really bad eye infection called iritis or anterior uveitis (the one associated with this disease) in which I could have gone blind had I not gone to the ophthalmologist. It is a kind of rare eye infection. It was so bad that I skipped my classes and skipped my Finance midterm completely because I couldn't study. Whenever I'd move my eye even with my eyelid closed I would have intense pain. The lights bothered me so I hung out in the dark. I even wore an eye patch so I could go out and get things done. Now that was AWKWARD. I met with a Finance tutor with it lol and even went to several dance classes at BYU. Now let me tell you, with one eye, dancing is hard because your perceptions are off! And it didn't help I had a dance performance with tons of lifts and I only had one eye! I put in my contacts just for that few hours. So my ophthalmologist wanted me to look into this disease because I got this infection and told him I had a relative who got them very often. This is when I found out I had the gene. I saw a doctor at the BYU Health Center and they said to see a rheumatologist but I didn't because I was cheap and poor haha and my symptoms went away for awhile.

Kind of like it said earlier, this disease is associated with lots of back pain. I had back pain in high school a little bit and got a few massages. Serving in tennis made it hurt. This whole summer I've had back pain. I didn't know if it was because I am in a smaller bed so kind of cramped or maybe I'm not exercising as much as I lost my gym membership? Thanks Golds Gym for not transfering my membership to the closest/only gym location here!

So I met with a rheumatologist earlier this week and we'll see the results probably today. If I have it then I may be in chronic pain for the rest of my life...
and FREAKY... if I had it horribly, my spine could fuse...
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I don't think that'll happen. The girl at the office says it happens in severe cases mostly with men, so good thing I'm a girl :) She said to not be afraid because when you google this disease you always find these sick pictures.

The hard thing about diagnosing this disease is that they will do X-Rays and sometimes it will come back negative and then a few years later it will come up positive so you never really know. They can also do MRI's so they may do that if they think its necessary after seeing the results today.

Oh and there isn't a cure. There are meds you can take and also it is good to exercise a lot and stretch so I may need to get a Yoga membership so I can do it everyday and get flexible!

Anyways, there is a lot more to this disease and if for some odd reason you know a person who has it please tell me what you know!

Anyone out there have an autoimmune disease?!

PS. On a happier note, there is a giveaway going on my blog right now thanks to Tiffany Rebecca Photography! Win a Print or a Mentoring session. More info here! You don't want to miss this giveaway!

21 comments:

  1. I don't have an autoimmune disease, but I do have a back problem with a scary sounding name like yours. I have spondylolisthesis, which means that I have stress fractures (4!) in my vertebrae (in my case, L6 - I also have an extra lumbar vertebra)that will never heal, and because of the stress fractures, my spine is slowly shifting forward. So even though I don't have the same disease, I completely understand the back pain, and I'm here to talk to if I can help.

    XO, J

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  2. I meant to write back to you on Twitter, but I really hope it comes back negative! I have an autoimmune disease--celiac disease specifically--but it's kept at bay simply by not eating gluten. If I kept eating gluten I could be at risk for colon cancer/infertility/early death, but as long as I stay away from it I'm good.

    Again, crossing my fingers for you that everything comes back A-OK. And I really appreciate your honesty here!

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  3. I'm thinking about you. Hop eeverything is going alright.

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  4. I'll be praying for you girl! I hope everything turns out ok :)

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  5. Wow! Pretty scary facts. Good luck on your results!

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  6. I've never heard of that. No more googlng for you! The worst case scenario is NEVER helpful. I have graves disease. Some people get these huge neck goiters and bugged out eyes. Ya, I stopped looking at pictures. Hugs and prayers for you!

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  7. I read it all! I hope you get the answers you're looking for and that everything turns out okay. I have an autoimmune disease, hypothyroidism. My thyroid just works slower on its own that other's, so I have to take medication to keep it regular.

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  8. ues i have an autoimmune disease arthritis when i was three when i was first diagnosed, then it went into remission and came back when i was 16 and has been off and on since then. good thing your RA factor test was negative but bummer on the diagnosis. that eye infection sounds horrible really sorry you have to experience that it sounds dreadful :-(

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  9. That stinks! I can sympathize with the pain though. I have a pretty bad case of Scoliosis, deal with Sciatica from time to time, and recently have started showing symptoms of Arthritis (sure they are all related). Man, I sound like an old woman! Anyways, if you ever need any advice on dealing with pain, you are welcome to ask me. I despise taking medicine and try other alternatives first.

    Jess

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  10. Read the whole thing! Hope everything turns out all right :) Good luck.

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  11. I can't imagine how much stress you feel, but at the same time, it's probably nice to know why you are feeling the way you do.

    Good luck!

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  12. Yikes! I'm so sorry this is going on right now!

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  13. Oh my goodness, this sounds scary but it also sounds like you have the best attitude about it!

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  14. Oh My Goodness. That is so scary. Thank you for sharing that with us, I will keep you in my prayers. I hope you don't look like that guy. It looks like the progression of man in reverse. haha! Except not funny if you have that.

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  15. I do. I have graves disease. Or hyperthyroidism. It's great. And my sister has RA. I hope you don't have it! It's not fun having a disease...

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  16. Oh girl I am so sorry, that is tough! I hope things only look up for you. I wish I knew more about it to help you out, but i don't. I did read your whole post to try to understand what your going through. I will keep you in my prayers! Also thanks for the sweet comment on my blog, I love long comments they're always fun!! :)

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  17. thanks so much for your kind words & encouragement.
    i have celiac disease and am insulin resistant (which can be linked to other autoimmune diseases) and have had chronic illness since march 2008, so i understand the devastation and discouragement associated with these types of problems. for your sake, i really hope the tests come back negative and that you'll be on your way to good health! either way, feel free to contact me if you ever need anyone to talk to... i can maybe offer some good advice (or just be a friend). :) amgleave@gmail.com

    take care,
    anna

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  18. oh my goodness! I hope you don't have that! It sounds scary! I don't have an autoimmune disease that I know of but I have something. Every few years I decide i want to know whatit is so i go in and they do a bunch of tests and find things but they dont match up and then doctors give up and so do i. I get SO sick. One time I had a "stomach flu" for 3 months. I really hope whatever it is you can get cured or find a way to live with it! :) you can do this!

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  19. My sister-in-law has this. I just wrote you an e-mail all about it. PRaying for you!
    xoxo

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