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ANKYLOSING SPONDYLITIS?

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    ANKYLOSING SPONDYLITIS?

    Hi guys! I just found out something very interesting. As I am packing up to move, I found some old labs from 2010, when I went to the jerk of RA Doctor, and I was positive for having this gene that causes Ankylosing Spondylitis. No one ever told me about it or anything. I just looked it up and this could be my answer for a large amount of my physical symptoms.

    But I haven't been able to find any evidence, other then a few people saying they have too, the same symptoms for my nuero ones, the confusion, ataxia, tremors, word searching, dizziness, etc.

    This could be a big part of why any diagnosis is hard to get. As the first neuro told me basically that I was crazy and I have too many symptoms for it to be MS. Maybe it's not, maybe it's AS with MS or some other nuero component?

    Has anyone ever heard of having both? Here's a link on AS. http://www.spondylitis.org/about/as.aspx

    Maybe it can help someone else too.

    #2
    Originally posted by sayccrn View Post
    But I haven't been able to find any evidence, other then a few people saying they have too, the same symptoms for my nuero ones, the confusion, ataxia, tremors, word searching, dizziness, etc.
    Autoimmune conditions tend to flock together, and it isn't unusual for people to have more than one. So there are people who have MS and lupus, MS and rheumatoid arthritis, MS and anklylosing spondylitis, etc.

    But please note that even the spondylitis site you linked to says says that the neurological condition AS is associated with is cauda equina syndrome which is scarring of the bundle of nerves at the base of the spine. AS affects bones and joints and ligaments which in turn affects spinal and peripheral nerves. It does not affect the central nervous system.

    Because AS does not affect the central nervous system, it does not affect the brain or cause confusion, ataxia, tremors, word searching, dizziness, etc.

    You could have both AS and MS and any other condition but all conditions would have to be diagnosed separately by the appropriate specialists.

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      #3
      Thank you

      Thanks, Now I have to work on that too. Well, there aren't any other tests for AS other than an MRI of the spine, and I need one for my MS like symptoms anyway, so I guess I can kill two birds with one stone with that! lol Trying to stay positive. Thanks so much.

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        #4
        Glad to be of help. Please keep us posted on what happens.

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          #5
          I have both

          I actually found out about the MS and AS about the same time. I had just moved to Georgia and was establishing myself with my new GP. I was hopeful that with a new doc I would finally found out what the heck had been ailing me for years because I didn't think it was fibro like they always claimed.
          After reviweing my entire history he said he didnt think it was fibro, he thought it was MS and something Autoimmune like Lupus so he sent me to the neuro and the rheumatologist.

          Anyway, I'm trying to give you the short condensed version of the story, lol. Found out I had MS & AS, this was in the end of 2012. I was so overwhelmed and wrapped up by the MS diagnosis that I never went back to the rheumy after she told me I had AS.
          Big mistake! Im suffering now because I ignored it when I first found out. It's a serious disease and if you suspect in any way that you have it then you need to have it investigated. Having the HLA-B27 gene doesn't guarentee that you'll get AS but having the gene is strongly associated with AS so I would definitely get it checked out!

          A few months ago I could barely walk from excruciating pain in my feet. Then it went to my hands, so bad that I couldn't turn a door knob, push the seatbelt release button or even flick the turn signal in
          my car! I got hard lumps on my finger joints and my fingers started to bend sideways. It felt like it happened overnight.
          I finally went back to my rheumy a few weeks ago and after some xrays she said the AS has done some major damage since my last appt. It caused bone spurs to grow on my feet and all over my hands. I kid you not when I say there is a spur on the tip of all 10 fingers plus multiple spurs on the 1st and 2nd joints of several fingers. There are also these spots of damage (don't remember the medical term) on my feet.
          I haven't even finished checking everything yet. On my first visit my SI joints were already fusing and I know that's gotten worse because the pain has gotten worse and we suspect their are spurs behind my knee caps.

          She wants me to start injecting Methotrexate every week to try to stop any more damage but I need to see my neuro because I'm not sure what to do!

          I'm sorry for such a long post but I just wanted to share what I could and maybe something could help
          Good Luck!
          Diagnosed MS 11/2012
          2nd Opinion DX RRMS 9/2013
          1st Avonex Injection 10/13/2013
          .....just keep swimming...........

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            #6
            Sorry for what you ALL are going through. But yes, I too have the HLA-B27 gene and saw a few Rheumies. Finally they did a full body scan and ruled it out. My daughter was diagnosed at 12 with AS but not sure she has it now. She's grown but does have Raynauds. (cold, bluish fingers).

            Get it checked out by a Rheumie to do the scan. They can actually SEE it. (AS)

            Good luck, Jan
            I believe in miracles~!
            2004 Benign MS 2008 NOT MS
            Finally DX: RR MS 02.24.10

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