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I have been in constant pain since i was 15 years old that started with lower back spams focusing around my SI joint.  The Doctors did X-Rays showing inflamation of my SI joint (presence of flluid etc) along with Fusing of my C4-C5 vertebrae in my neck. I saw a rheumatologist and was also tested positive for the HLA B27 Gene which i read is a common indicator of Ankylosing Spondylitis.  The Rheumetologist did not diagnose me with AS at the time.  I am 20 now and every day is getting harder and harder to complete normal tasks.  I had to quit playing sports in highschool because of joint pan and discomfort and i have a hard time keeping a steady job for the same reasons.  Recently i found out i have an inflamed process which i also read can be a side effect of AS.  I am wondering if anyone out their can give me advice on what to do or who to see that would help me.  I have already seen a rhematologist once but i do not think he diagnosed me correctly simply because he didnt know all the facts.  I live in Virginia and would like to find someone that could diagnose me or at least look at my medical history. THANKS

1 like, 10 replies

10 Replies

  • Posted

    Please see another rheumatologist. Your story sounds exactly like my daughters. Her pain started at eleven. She is now 19. She didn't show on the X-rays until 18. But you have the gene and X-ray evidence and pain. You deserve to be diagnosed correctly. Not all doctors are apparently knowledgeable. Keep trying until you find a diagnosis. You are on the right site. Keep trying. Good luck.

  • Posted

    Go to another doctor. Doctor is not god, hence keep changing it till you get proper treatment.
  • Posted

    Hi Tom,

    ​? Absolutely see another rheumaltologist if you feel this one is not listening or considering all options.? There is a startling lack of knowledge about AS, even among some rheumatologists.? Try to find one with specific experience in AS and/or the spondyloarthropathies.? ?But I am not clear on whether you specifically asked your doctor about AS.? Remember that it is your body and you have to be the advocate if no one else.? There is nothing wrong with you asking the doctor "why are you not considering AS"?? When I went to the rheumatologist for the first time I had a long history of lower back pain and a strong family history of the same.? I specifically asked her if there was a chance I had AS.? Turns out she agreed but it started by me asking the pointed question.?? Best of luck to you and please don't be afraid to push your medical people when necessary.

    • Posted

      Hello peter,

      Tomorrow i have appointment with Rheumatology doctor. I am in severe back pain since 2.5 years. I cant even bend in any direction, i am so stiffed. I am hla b27+ but no sacrolities in mri or xray, hence doctors are not starting treatment. How do i convince him. This is my 5th Rhummy doctor.

    • Posted

      I think the answer is that you can't convince him.  It's not your job to convince him; only to ask the pointed questions and to make sure he is looking at all options.  It sounds like you are in that no mans land that so many sufferers find themselves in.  Too many doctors (even rheumatologists) do not understand AS.  It is a binary thing with them.  You either have AS or you have nothing except maybe normal osteoarthritis.  AS is part of a family of inflammatory autoimmune diseases that collectively are called seronegative sponsyloarthropathies.  By definition, you need to see evidence in the x-rays or MRIs to call it AS.  But just because you don't have that evidence they should still be dealing with it as a genuine autoimmune disease.  They generally refer to it as axial spondyloarthropathy in this case and it should be treated in exactly the same way as AS.  Get on the internet and do some reading on seronegative spondyloarthropathy or axial spondyloarthropathy or even axial spondyloarthritis.  There are good articles out there even if some of them are a bit technical, you will get the point.  If you have spine pain that has lasted for years, are HLA-B27 positive and may even have a family history of similar problems then you should maybe ask your rheumy why they are not looking at the spondyloarthropathies.  Psoriatric arthritis is also another example of inflammatory ilnesses lumped in that family of spondyloarthropathies.  Best of luck to you.

    • Posted

      Thanks Peter for such wonderful explanation.

      why i think i have AS

      1. Hla b27+

      2. Back pain since 2.5 years

      3. Complete back stiff, cant walk.

      Why doctors think i dont have AS

      1. NO sacrolities in all 5 mris and 8 xrays

      2. Esr below 10 and crp below 1 (tested 12 times)

      3. No family history of back pain

      4. I was fit till age 39

      5. Sleep well at night.

      6. Immediate pain relief when i sleep on left side (my 95℅ pain on left side)

      I am trying best but doctors not listing, i insisted for bio injections too, but doctor became angry.

      I am not sure what to do instead of crying. I have taken 9 steroid injections in back but not helped at all.

      I am so frustrated and my all 4 Rhummy doctors too. They dont want to see me now.

  • Posted

    Hah.  Believe me when I tell you I feel your pain.  I perfectly understand your frustration.  Unfortunately it can even get worse.  I, too, have had 4 different rheumatologists.  For various reasons (moving or insurance reasons) I have three new rheumys after getting my initial diagnosis.  Even if one gives you a diagnosis, you almost have to start over each time since the new one may question the conclusions of the previous ones.  I have been there too.

    ?You do have a mixed bag of symptoms.  Traditionally night time is not a good time for AS sufferers.  Sleeping and rest causes increased pain and stiffness and often morning is the worst time.  Then as you get moving, maybe take a warm shower, you loosen up a bit and things feel better.  Diagnosis is easy for them if they see the evidence of ankylosing or fusing in the imaging studies.  When you dont see that, things get tougher to diagnosis.   It's also possible, of course, that you may have more than one thing going on at the same time. 

    ?The other point is that these illnesses are called seronegative spondyloarthropathies.  That means that you do not have the same indicators that you would have with something like rheumatoid arthritis.  Specifically rheumatoid factor is not out of whack like it is in RA.  But I think that other indicators like ESR and CRP dont follow the same pattern that they do in RA.  Mine may be borderline high at times or they may be more normal.  They are never as high as my wifes measures who has RA.  The point is that these are not the same reliable measures as they may be in some other rheumatoid conditions.

    ?Finally, though, you do need to be careful how you talk to your doctors.  I make it a point to ask a lot of questions and make sure I understand what they are saying.  I may challenge some of their assumptions about my symptoms.  But you have to be careful that you are not questioning their expertise to their faces.  Doctors like any human being, have egos.  Questioning their expertise is never a good idea and never a good way to build a good relationship. 

    ?Sorry I have no hard answers for you.  Keep trying and if necessary, find another doctor.  The other thing you may want to consider is that up to a point the diagnosis may be inconsequential.  Except for the biologic drugs, often times the treatments they give are similar whether they say you have RA or simple osteoarthritis.  Antiinflammatories are a common drug of choice in both cases so if you lose the diagnosis battle you may get the same treatments in some cases.

    • Posted

      Thanks Peter,

      I read your reply carefully before going to doctor. Finally, doctor agreed to consider me AS patient and given me etorocoxib 90mg twice tablet, and some vitamins with it.

      After 10days, he may give bio injection.

      Let's see.

      Thanks again.

  • Posted

    Excellent!  I hope it works out well for you.  Biologics take a while to have an effect if they are going to help.  So, be paitent with it if they go that route.  Take care and best wishes.
  • Posted

    I'm on my 7th rheumy who put me on the biologic Enbrel.  After 4 weekly injections I started getting relief.  But then I was having injection site reactions because of latex needle covering with the autoinjector and I'm allergic to latex.  I switched to the freeze dried vials where you have to mix with saline, draw it up and self inject.  It does not sting like the autoinjector, probably because of preservative in the latter.  I lack positive indicators for AS except my CRP is very high, but suffering from both axial and peripheral AS for 35 years.  Since I have gone through menopause, I have been suffering a lot worse.  Six months ago I had costochondritis where it felt like I had broken ribs and it hurt to breathe.  The biologic may not fix the damage already done, but it will prevent anymore damage from occuring.   Let me know how you make out.  Best wishes to you.  Gina

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