AS but no treatment

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At age 40, i suddenly started back pain, it became so severe that i cant walk, bend, twist. I am having this issue since 2 years and in lot of pain. 

I am hla-b27+ and visited 4 doctors till now, but no one is starting any treatment.

In last 2 years, I have done four MRI scans (3T) spine & SI joint(detail, stir) but without contrast  but everything normal. 5 xrays, one 3D CTScan but they are normal. tested blood 8 times, esr always range between 3 to 10. CRP less than 2 always, all other tests thyroid, lever, kidney, SGPT etc etc. are normal. But I am in heavy pain, it is so bad that I cry many times. My entire body pains.

My all 4 rummy doctors not starting medicine, they says that I dont have AS. Please help what to do. If there is no issue in spine, or any joint, nothing in blood then why I am in so much pain in 24 hours sad

I left my job since 8 months. I have small kids. I am not taking any medicines. 

Any specific test can help me. Please advice.

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22 Replies

  • Posted

    Hearing your pain!   It is so difficult to persist with the medical system to get a diagnosis and a treatment that truely helps YOU, but you must persist and also keep learining from these websites.  I have HLA negative, normal all blood tests, mild inflammation on MRI, no radiographic damage, educatiing myslef, no gluten, no dairy, and just when I think I am getting somewhere (regular exercise eg swim and stretch or walk etc) its 10 steps backwards in agony.  I have read so much that it is a about managing the pain and the disease, there is no clear FIX.  It's a lot easier to say than do, but try to keep your spirits up and rest too if you can.  And find a good doctor, this is my quest too.  All the best (:-)


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    • Posted

      Thanks Kay.

      I am doing excersize but sometime it hurts. Like if my SI joint pains after walk, I must go to sleep. In morning, it becomes ok. When I move hands my shoulders pain a lot. If I sit on my pc table for hours, my back pain goes off, but once i stand and move, it starts again.

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    • Posted

      Physio therapy can give you the right exercise just for you, if you get a very good one.  For sure balance move and rest.  My pain is worst when i sit or am still, but I do recover a bit after sleep, if it is possible due to the pain.  So I have found that not everyone fits the exact symptoms.  There are some very good Face book pages!  I think no quick fix here, i wish!  Sounds like you have tried many doctors!!!


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    • Posted

      Thats true. My pain is worst when i go to bed. No pain in midnight or morning when i wake up. Hence i sleep atleast 10 hrs, sometime 12 hrs.

      Do you think contrast mri needed?

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    • Posted

      Ofcourse we all want a clear diagnosis, I am not sure it is so easy to get.  And ofcourse a wrong diagnosis will preclude the right treatment eg the way a physio treats you, medicine etc but no diagnosis may help people keep trying to find the right one!!???  If you do get an As diagnosis then the ultimate drugs are bilogicals and they are NOT a cure.  I had a bone scan and, i think it is, a contrast MRI with it and am waiting for the results  now.  Maybe the answers will be clear?  For me!?
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  • Posted

    Sorry to hear about your pain and frustration.  I was once told by a rheumatologist herself that rheumatology is as much an art as it is a science.  Very comforting huh?  But diagnosis can be a brutally slow process and then after getting a diagnosis you may ultimately see another doctor that questions the first doctor's conclusions.  I have been there too.

    ?No real advice except to hang in there and make sure you have a rheumatologist who has specific experience with the family of AS diseases.  Some rheumatologists have not dealt with this very much.

    ?But a couple of other observations.  Don't worry that you don't have radiographic evidence of ankylosing.  Many of us fall into that bag where they cant really be called AS since AS requires that radiographic evidence by definition.  That does not mean you don't have an autoimmune disease which causes pain, stiffness and inflammation of the spine.  But secondly, the classic pattern of AS related pain is that mornings tend to be the worst time.  AS sufferers are worst when just getting up and the pain tends to get better as you move around and get on with your day.  That is obviously not written in stone but seems to be a common pattern.  Finally they tend to add contrast to imaging studies when there are things in the picture which could be confusing.  Scar tissue around old surgeries is one example.  Scar tissue can look like disc tissue so dye is added to make that differentiation.  I dont think it necessarily would make any difference in seeing evidence of ankylosing.  Just my thoughts.  Best of luck to you and keep pushing the doctors for a diagnosis.

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  • Posted

    Morning stiffness is one of the key symptoms of A.S.

    From what I read you don't suffer from morning stiffness as much at night.

    Those symptoms don't seem to be positive for A.S.

    But there are many different types of arthritis.

    I would take Advil/ibuprofen if you are able. 

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    • Posted

      Advil/Ibuprofen is a great idea. Since AS pain is caused by inflammation, a person with AS should have some relief with OTC anti-inflammatories. Have you given this a try?

      At one time I was informed by an Ivy League rheumatologist that I was in remission from AS. No inflammation in my joints. But my pain was substantial. It turned out I also have fibromyalgia.

      Have you seen a Neurologist? There are other conditions with similar symptoms that can be ruled out with a thorough neuro work up.

      Sorry I can't recommend a slam dunk solution for you. Some things that can be helpful with AS: a hot shower when pain is up, stretching, moving in a warm pool, etc.

      For me, a good nights sleep, limiting life stress, and a healthy diet go a long way.

      Also, caffeine increases my pain levels.

      Good luck!

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  • Posted

    I had/have a very similiar experience. My RH doctor finally put me on methorexate( kinda scary). I gotta admit it seems to help. Keep going, tell them what you have read here. Good luck
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  • Posted

    Thanks. It is really amazing that people started replying me within a day, it boosted my moral support. Thanks everyone. 

    My biggest challange is I have visited all 4 rhummy doctors in my city. All of them have same conclusion that I have no AS. 

    I think I have AS because: HLA-B27+ and chronic back pain.

    Docs says no AS because: No family history, no morning stiffness, Normal MRI, CTScan, ESR always 3 to 10, late sudden onset age i.e. 40.

    All doctors have 10 to 22 years experience. I had argument with one doctor but he politely said me shut up and dont come here again. 

    What should I do now. No rhummy doctor left in my city now. Other doctors send me to rhummy and rhummy send back me home.

    Other challanges:

    1. Can't sit or sleep on hard surface

    2. Pain starts within 3-4 minutes as soon as I touch my back to bed.

    3. Can't lift even 1 kg weight else pains a lot

    4. can't bend forward, backward, or any other side. I am straight always.

    5. Can't walk fast.

    Why SI joint MRI and 3D CT scan were normal last year even when I was not even able to walk 10 feet, was so much painful SI joints?

    Shall I start spondilysis medicine my own?

    Thanks Friends.

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    • Posted

      I have all your 5 symptoms, though sometimes, on a good day I can walk fast, and also I cannot sit on soft surfaces either.

      Obviously see a doctor for medication.  

      Look after yourslef, let us know how you are going.

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  • Posted

    Hi Khairnar,

    To me, your symptoms are of fibromyalgia.

    HLA B27 is a protein found on white blood cells. If an HLA B27 test result is positive, it simply means one has a greater-than-average risk for developing or having certain autoimmune disorders. A positive does not guarantee you have illness...this is fabulous news because I can personally tell you that having autoimmune disease is very difficult The treatment for autoimmune disease can be drastic as in my case. I truly hope you do not have autoimmune disease.

    Rheumatologists are proficient in autoimmune disease involving HLA B27 ...

    Have you considered NSAIDs that you can purchase without a prescription...just do nit take an NSAID and aspirin concurrently. Or acetaminophen with doses taken no closer than 6 hours apart

    Please do not shun these options....I remember when all NSAID medication was available by prescription only.

    ,kind regards


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  • Posted

    Hi there Khairnar,

    I wonder if you could have fibromyalgia &/or myofascial pain complex...

    Research these and see what applies to you.

    There is not a one specific test that diagnoses a person with AS or Fibro, but 4-5 persistent symptoms.

    With ankylosing Spondyloarthritis. With me, and for what I've experienced and also learnt, that we experience pain on and off and increasing as time passes for about 10 years before it actually shows up on an X-ray.

    Mine started in my sacriillolic hip joint. I have only been officially diagnosed in the past few yrs with AS and only 6 months with fibro.

    Pain relief, works best for me is Panadol osteo.

    You don't need to go without pain relief- my body let's .e know when I should have taken some.

    Pain intensifies with physical and mental stress and the brain is so smart that just thought processes triggered by memories, fears and worries make it worse.

    Gd luck....

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    • Posted

      Thanks Jillian,

      I will check for fibro too. I have few knots in muscles and those initiating pain when stretched or pressed. If i press those by thumb they pinch nerves and result in sharp pain. i always sleep on very very soft bed. All those points hurt severely if i sleep on back. since 2 years i am sleeping on either side.

      i feel most comfortable on left side rarely on right side. is it what fibro or mayofasial?


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    • Posted

      ..hi again, I have a few suggestions for you:-and this is only going on my experiences and The really soft bed needs replacing for a firmer mattress and always do a few gentle stretches each time you have a shower and before you go to bed and get out of bed.

      I've learnt a lot from watching video clips on internet sites and also a few trips to physiotherapist and also sports massage therapists/Bowen therapy can hell remove knots in muscles. Hydro therapy is awesome for me as is swimming. Really important to try and reduce stress in our lives and r e l a x. more.

      I found a really good book in the library and bought my own- fibromyalgia and myofascial pain complex. Some people can have one and some can suffer from both...I'm thinking I may have both as well as my AS.

      Meditation , even if only short burst a few times a day, can help lots and also use positive thinking and try to avoid negative people as much as you can. The more stress we experience the worse the pain gets. Our body remembers and triggers a response but we can try to train our

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    • Posted

      . We can try to retrain our brain to reduce the pain response by relaxing and repeating affirmations- we may only need to do it for a while and one day find that pain is reduced and we are more relaxed. It is pretty hard at first but is working for me.

      .. like the body, our brain also needs maintenance. AS and fibro have forced life - style changes for me and it's been really difficult for me to cope with as I've been a really energetic person all my life, but I'm making headway now and starting to accept my new limits. Time to use more of brain and do less physical stuff. Learn my limitations...

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