Question for Seasoned AS Patients

Posted , 5 users are following.

I'm fairly new to AS, was diagnosed 6 months ago. I'm wondering....My AS is being managed by my rheumatologist. For each individual issue do you all see specialists for that problem? IE...I'm having ear pain and saw an ENT and he said my ear is fine, did test, etc. He has now referred me to a chiropractor for adjustments because the ENT feels the ear pain is from my AS.

  1. Have other AS patients experienced ear pain?
  2. Do you go to specialists for each new symptom for relief?

Thanks,

Diana

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6 Replies

  • Posted

    It is possible to have AS and something else, so your doctors should be careful when explaining everything that affects you by your underlying condition.

    You should always do all the tests before accepting that it is just AS.

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  • Posted

    Diana, no Ear pain. Had AS for 36 years. I have other immune problems and different Specialist is warranted. My AS Dr takes care of my Osteoarthritis also. Currently on Cosentyx. Haven't been on it long enough to feel relief. ESR and CRP as expected are high. Was on Humira before change.Going to Physical Therapist helped pain in neck and back from Osteoarthritis. My AS has stayed so far in Sacral Joints. Best

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  • Posted

    I have slight ear pain and neck pain and experiencing slight balance problems, I tend to put it down to AS, with the balance thing my doctor prescribed an ear spray because my inner ear was a bit inflamed, again I put it down to AS.

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    • Posted

      In hind site I do not believe my ear pain is from AS. An ENT lumped this and my imbalance onto the AS. I fully believe that my ear pain that comes and goes is from stress. I continue to have no answers for the imbalance but have written it off to one of the dozen medications I take. It's something I can live with.

      My current status is that I've now had Methotrexate added along with my Enbrel injections and after 4 weeks I started having some relief. I am hopeful that I will have more and more relief as the weeks go on. I'm thankful to have HOPE again. : )

      My final diagnosis (or current) is Ankylosing Spondylitis Enthesitis. (Inflammation where the tendons and ligaments attach to the bone) This isn't the norm but I'm not alone. There are people out there suffering the same struggles as me. But...There is HOPE!

      Diana

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    • Posted

      Our health issues are so complex aren't they! I agree about stress and anxiety causing aches and pains, a Dr recently explained to my daughter how stress and anxiety often presents as pain in the head and face because that area is your first line of defence and it does make sense to me. If I focus on my balance and dizziness problems they definitely become worse!

      I can't blame anything on medications because I'm not on any.

      I was diagnosed with AS over 20 years ago but I can track it back to my early twenties, I'm now 63, I have had four children and the mechanics of childbirth has triggered my AS off, I only realised this after my last pregnancy when I was diagnosed.

      We basically just have to live with it and deal with each new symptom as it comes along haha. I do have neck problems and I believe that this is where my dizziness and balance problems mainly come from.

      In answer to your original question, I don't see individual specialists for anything, I don't see anyone, preferring to get on with it, I don't say this lightly because there are an awful lot of people who do need medications for AS and accompanying illnesses, so I think myself lucky.

      Best wishes

      Annette

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  • Posted

    I had ear pain from time to time with my spondylitis. In fact, I even have tinnitus that I can't stand but i'm getting much more used to it. AS affects the joints, ligaments, tendons, etc. and we have those things also in our ears, so it makes sense. Do your ears itch?

    I have had to see specialists for various symptoms that i know are related and the sad thing is most don't put two and two together, dismissing the connection. find yourself some good doctors who see the bigger picture. My primary provider is quitting medicine at the end of next month but he was my rock....he took the time to listen and understand. I happen to believe that autoimmunity should not be classified by breaking it down to 80 or so various diseases when chronic inflammation pretty much affects the entire system over time. there should be autoimmune clinics versus various doctors for us to see.

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