Diagnosed with Ankylosing Spondylitis

Discussion in 'Community Discussion' started by imsostupid, May 21, 2012.

  1. imsostupid macrumors newbie

    Joined:
    Feb 19, 2012
    #1
    HELLO MR.

    I was in a venting sort of mood so i thought, what better than to vent on a community board where everyone is anonymous.

    I was diagnosed with AS two years ago after experiencing pretty bad buttock pain. It would come and go but when it was bad, it was bad. I wasn't even able to stand up.

    The doctors told me that people with AS have a chance of losing all mobility in their spine, making them permenantely hunched over at the age of 40. They said that the chances are slim but it is there.

    Till now, I was coping fine. I mean, the pain would come and go so it wasn't on my mind too much. I was hoping that what I had was just a mild degree of AS where the pain would only be there sometimes. None of the other symptoms showed up so I felt like i was in the clear.

    During the two years, I was on holistic medicine and it seemed to work fine. I didn't like the idea of being on naproxen the rest of my life so I chose to go the holistic way. As ambitious as it sounds, the holistic medicine was supposed to eliminate the pain within a year. Other than the very sparse flare ups, i feel the holistic medicine semi worked. Once the year was up, I stopped taking the meds. Everything was normal (exlcuding the random flare ups) till last week.

    Last week my right eye starting hurting when I put pressure on it. One night, because the nagging pain was so irrotating, i assumed that i would try torub it out. When i rubbed it, after the initial pain, it felt pretty good so than i just went to sleep. WHen i woke up in the morning my eyes were completely blood shot. Not only that, I developed a sensitivity to light. Any sort of light would give me a seering headache. Light would go through my eye lid if it was shut and would lead me to covering my eyes with my hands. It was bad.

    I ended up going to the eye doctors today and she let me know what the reason was. Until then, I was hoping it was pink eye because the symptoms said eye aching and light sensitivity (and the usual red eye). But i lacked the main symptoms, itching and crusting. Regardless I was hoping it was pink eye. The doctor ended up telling me that AS victims are prome to inflammation in their eyes and that if it goes untreated the whites of my eyes began to slowly fade, making my iris a bluish color. She perscribed me 800mg of ibuprofen, which has to be taken 3 times a day. After being off "legit" meds for over a year, going back leaves me hestitant but it seems as if their isn't an alternative. I just googled "800 ibuprofen" and alot of the results came back to people only taking one a day, so Im already uneasy about taking 2400mg of ibuprofen a day, but the doctor knows best right? I actually chose to go the ibuprofen way over steriods.

    But at the end of the day, even when my eye gets fixed. Its leaves me discouraged about life. Im 21 years old and my quality of life is already decreasing. What I thought would be occasional pain in my back/butt area, its now spreading and the other symptoms of AS are showing.

    My eye being jacked up made me realize that I truly have AS, as stupid as it sounds. I guess until now, I assumed that if I just tucked it away in the back of my mind that I could eventually forget it. It discourages me because I know eventually the other stymptoms will eventually come up.

    Anyways. Thank you for reading my rant. Im not looking to get comments such as "aww you'll feel better." Not really looking for a pity party, my head was just feeling congested and figured that a forum would be a good place to let it out.

    :)
     
  2. iJohnHenry macrumors P6

    iJohnHenry

    Joined:
    Mar 22, 2008
    Location:
    On tenterhooks
    #2
    A good dump. ;)

    I've seen some odd ****, including Lupus, ALS, emaciating fasciitis, and even someone attacked by their undeveloped twin's DNA, but this is close.

    One of the symptoms of all the treatments the last one has gone though is migraine.

    She is now 'manageable' with Botox shots in her neck, head and face every 6 weeks. Oh, and she's been Blind since 16. She's 42 now, and holds the record for the gustiest person I have ever had the pleasure of knowing.

    I would suggest you skip the holistic method. It promises to treat the cause, but does nothing for the symptoms. I think you would best be served by trying to go for a better quality of life.

    If any of this makes the slightest sense?
     
  3. iJohnHenry macrumors P6

    iJohnHenry

    Joined:
    Mar 22, 2008
    Location:
    On tenterhooks
    #3
    470 views, and no new responses. But in this case I fully understand.

    What do you say, not say?

    Here is some further information on this affliction.
     

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