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Anyone have ankylosing spondilitis?

KarenDKKarenD Posts: 742
edited 03/04/2015 - 3:43 AM in Arthritis, Osteoarthritis
I was wondering if anyone here has ankylosing spondilitis? A.S. is a certain type of arthritis, I also have O.A. I have a lot of issues throughout my body with spinal disc issues and pain.

Thanks.
KarenD
4 level ACDF C4-C7 5-2-11, laminectomy & discectomy L4-L5 1/26/12, ALIF L4-5, L5-S1 12/10/12.
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Comments

  • Hi Karen. I have not been diagnosed with this, however, my new PM doctor wants to rule it out, as I have been struggling with horrible SI joint pain for the past few years. And the reason for this is pretty much inexplicable. I have other joint pain as well and may have some OA. I have an appt w/a specialist on Aug 9. I was wondering what your symptoms were when you were diagnosed? Did you only have the SI joint pain? How did they make the diagnosis? Thanks for any info you can provide. Sorry I can't help you much here. Lisa.
  • When I was first evaluated I had a lot of bone spurs in my neck, lots of inflammation. I definitely had a lot of pain in my SI joints. I also had bursitis in my hips or elbows from time to time. Also, I was HLAB-27 positive - which is a gene that if you have you are more likely to have A.S., but it doesn't mean you necessarily will. Also, you can still get it if you don't have the gene, but not as likely.

    I guess your appointment was today...how did it go?
    KarenD
    4 level ACDF C4-C7 5-2-11, laminectomy & discectomy L4-L5 1/26/12, ALIF L4-5, L5-S1 12/10/12.
  • I was diagnosed with "some sort of spondyloarthropathy" a couple of years ago, but am HLA-B27 negative, have amazing flexibility, which would indicate it is NOT A.S., and have just started on Enbrel. My SI joint pain has diminished to almost nothing and the spine pain is almost non-existent now, but as I become more active, other joints with O.A. are really acting up. My hands and knees feel like they are twice the normal size (this started before the Enbrel) and ache at night, and my facet joint pain still flares up. BUT....the SI pain is gone, which makes living with all the other stuff much easier!!

    My new rheumatologist feels I probably have psoriatic arthritis, despite the fact that I don't have psoriasis (though it runs in my family).

    Sitting is a big one for me; I like a straight-back chair if I don't have my recliner, and I have to be very careful about footwear if I'm going to be doing a lot of walking.

    Prior to the Enbrel, the best treatment for my SIJ pain was rhizotomies with a steroid injection, but I also had many, many trigger point injections.

    Hope you get some answers, Lisa.

    Tracy
  • It seems like it's always some sort of unidentified spondyloarthropathy. To us it's another kind of pain. Tracy - I really like the quote by Forster. It was "funny" when I went with my daughter (21) to our rheumatologist and he saw some psoriasis and said almost happily "Oh, you have some psoriasis" which along with HLA B-27 and fibro, he decided to put her on Enbrel. I used to be on Enbrel but I'm on Himira now.
    KarenD
    4 level ACDF C4-C7 5-2-11, laminectomy & discectomy L4-L5 1/26/12, ALIF L4-5, L5-S1 12/10/12.
  • I love that quote! It applies to everyone, I know, but really struck a chord with me when my brother sent it along!

    Hope your daughter is getting some relief from the Enbrel.

    Tracy
  • Thanks so much Tracy and Karen. The appt went ok, but the Dr. Struck me as a lackluster rhuematologist. For example, she did no bloodwork at all. None. She started w/only an x-ray of my SI joints. This reflected some problems so she followed it up with an MRI of the sacral plexus. This has shown inflammation, sclorosis (sp ???) and "edema in the bone" of the right SI joint. I think this all basically means sacroilitis. She said that she needs to actually see the films to figure out if it is either psoriatic arthritis or ankylosing spondylitis. I went to a medical clinic connected with a teaching school and they seem to work at a slow pace and do not run a lot of tests. Given the level of pain I have been in now for 5+ years, I scheduled an appt. w/a private Rheumatology Center that my aunt goes to for RA. It is located in DC and they have a lab and scanning equipment right in the clinic. The Dr. I am scheduled to see is listed as one of DC's best Dr's in this field. I want the bloodwork, a bone scan if needed and, for once, I want to be over-diagnosed and over-treated as opposed to seeing a bunch of docs who all take a minimalist approach to things. So, my appt here is on Sept 23, but I may have an analysis of my MRI sooner than that by the lackluster dr :-). I will keep you updated
  • A bumber of years ago I went to the ER with unbeleivable low back pain. This was not the first time and they shot me up with ibuprofin and gave me a muscle relaxer and a half hour later I walked out with little or no pain. But the Xeay tech who I knew already told me I had a bamboo spine. That's what AS looks like. I have had three years of ESI injections but the pain is so bad in the mornings now I saw a neurosurgeon and he calloed it AS and I am scheduled for surgury in 18 days.
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    Post Edited by Moderator haglandc
  • If you are a woman many dr's and rheumy's dont like to diagnose AS unless fusion is already starting, many still believe its only a mans disease. We need to stress the fact that women also get it. I belong to alot of private groups on a social media group that have thousands of women with AS. Not all people with AS have the gene Hla-B27 but I belive they dont call it AS then, you would have to search the term cuz I forget the name they called it. AS is very genetic also. I have several uncle I belive there is 7 of them on my Dads side, my Dads Mom had it, My Dad has it, my sister and my nephew who is only 24. I need to get into a decent rhuemy. The first and only rheumy I have seen was a quack, told me to move my neck and I have a very limited range of movement to begin with but because I have some I was told I didnt have AS, he looked at my hands told me I didnt have AS, he actually asked me what the HLA-B27 blood test was for he didnt have any clue. When I got home from the appt I was told by my husband his office staff acutally called my house thinking it was the lab, trying to ask him what the test was for. I decided he was a quack and my first clue should have been how quickly I got into his office, the same week I called his office for the appointment. He didnt even look at my xrays or ctscans. My Dad is almost 70 now he didnt get his diagnosis till about 10 yrs ago and by then he was almost completely fused from top to bottom, he just recently had neck surgery and I forget what it was, sorry adhd inattentive with memory issues. So the key to AS is getting a diagnosis asap and getting on the right meds to slow the progression I think. If you arent getting cooperation from a rheumy find another one. Sometimes it takes a few to get one who takes you seriously. Good luck to you all!!!
  • Sad about your condition. Aside from medication which is the common treatment, you can do some remedies like exercise. Therapy like acupuncture and massage are really helpful. Your daily activities is important too, try to be more observant of your posture especially when in bed.
    PAIN can CHANGE you, but NEVER let it DEFINE you.
    Treat arthritis pain
  • I know I can do all those things, but my pain dr wont allow me to to do those yet. I asked about PT and exercise even mild stretching and he said no way not right now. I have tons of other back issues also. DDD from L3-S1, 2 herniated disks and 1 herniated and bulging disk at L5-S1 that causes incontinence issues only when I am sleeping for a few hours flat on my back. It doesn't do it any other time. I also have a degenerative endplate in there, spinal stenosis in a few spots, some nerve root impingement in alot of spots. He thinks I have osteoarthritis he said everywhere on my MRI. I also have a hemangioma but I am not sure if its big enough to cause problems. I have several bone spurs. And this is all just in my Lumbar spine MRI. This has been going on for over 2 years and just got state insurance. I cant stand for more than 5 minutes can't walk for more than 15 minutes, can't bend or arch my back at all, can't squat. I have had 2 steroid epidurals the first one took 3 days to kick in it lasted only 7 days the 2nd one was 6 weeks later and caused extreme pain and swelling all over my body bruising all up my back, and didnt work at all. None of this includes my cervical issues I have straightening in my neck, my head is super heavy, I have to hold it up with my hands, it grinds everytime I move it, my arms and hands are numb more often than not. I have a script for a Mri with and without contrast. I did have a ctscan done of my neck last year and there were numerous bone spurs up there and thats where they seen the straightening of my neck. I also have a script for a neurosurgeon. Im waiting to see them till I get my cervical mri done. I also have bone spurs on my left femoral tip causing severe pain when I walk. I am just a hot mess of pain. I am only going to be 40 this year. I am hoping to get all this fixed as much as I can soon. Im going to be a first time Gramma in June! Sorry for the huge book I wrote and the spilling of my guts! It feels really good to actually have a place where I can spill it all and people will understand it. Oh and also the HLA-B27 test I had done was at a rinky dink lab that had no idea even how to print the labels for the vials or even put it in the computer to send it to the lab, I am concerned they may not have even been able to test it correctly. And my dr's have said that genetic testing like that is most of the time only able to be done at hospital labs. So I am hoping to have it retested. Maybe that will shine more of a light on things.
  • patrain17ppatrain17 Ottawa area, CanadaPosts: 103
    I had an appointment with an orthopedist last Friday because of pain in my hips. I already have a history of spine problem. I am fused from occiput to c4 and have OA all along the spine with mild scoliosis in the lower back and severe problems from that. We talked a bit about that history when I met him and he asked me why I was there to meet him and I told him about my hip problems. He sent me for some x-rays and was able to confirm that my hips were definitely starting to be in bad shape. At that point he came out with the name Ankylosing spondelitis and decided to send me to a rheumatologist. Researching on the condition, I realized that I had lost of symptoms associated with it mainly pain in hips, spine, shoulders, elbows, knees and even a minor one, psoriasis which I started to have a few months ago. I can even had to that extreme fatigue where I could stay asleep all day and still be tired. I've been really bummed up since. Don't know what to think since I don't have a definite diagnosis yet. :(
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