Hi, just curious if anyone has this and what symptoms they might have that are different from other types of arthritis.
Thank you.

AS is rare in women (from what my Rheumy say) . I had the test run it the HLA-B27 blood test and it came out negative. However I have do have spondy. because of moderate stenosis.
My symptoms were severe neck and back pain . Mostly in my neck and lower back. Vision loss,paraplegia (still have it). I'm have more pain and stiffness in the morning and evening hours . Execizes makes my muscle stiff,spasm, swell and hurt . I can't walk but a few feet at a time and my legs can go completly numb at night . I have trouble with shortness of breath,bowel and bladder problems. Did I mention fatigue.
However I do have RA to and that can explain somethings . It's not uncommon for people to have more than one arthritis. But it can be hard to figure out which type it is. here is a link on AS /www.spondylitis.org/about/ankylosing_spondylitis.aspx

[This Message was Edited on 01/19/2009]

Yes, thats exactly what I was getting at. My Reumy says I have it but I dont test positive when I had the blood test either, but he said sometimes it will take along time to show up or it never shows up at all. My gma had AS severly and when I was 14, I am now 37, I started getting alot of the same symptoms she had. I am getting worse and worse.. I went to her Reumy and he told me I got it from her. He said I have all the same things she did, it was almost like he didnt want to treat me, being me.. I felt like he didnt listen and that he just wanted me to do wahtever she was doing. She was 82 at the time, big difference in age. I quit going to him because I was having a hard time dealing with the fact that, that was what I had. I saw my gma go through so much and I was scared. However it is all coming back to me... I am having numbness in legs.. severe pain in legs, hips and lower back. Also my neck has swelled and hurt for years. I have pain on the bottom of my heels, like I am walking on needles, I have pain on my upper chest and around my color bone. I have the pelvic pain and bladder problems.. I dont know what to do, I guess I need to go back to another ruemy. I am going to really search around for someone I like. I live in Northern Nevada and I know there arent alot of Reumys here. I may even travel to Northern California if I have too. I am so tired of feeling like this. I work part time and I dont even feel like I can do it anymore. Oh yes I am sooooo tired. I get up after a painful nights sleep and am so stiff I can hardly get up, then about 1/2 hour of being up, I am exhausted again... I have fallen asleep at my desk before at work. I dont know what to do.. please give me any more advice you might have...
Thanks so much for responding...
Hugs to you.

[This Message was Edited on 01/19/2009]

70. Whether I have it or not, I don't know, but my lower back stiffness is the worst part of my body. Stiffness, aching, burning...

I take no hard drugs, but lots of other type works. Stretching, aspirin, MSM, and dealing....

Many years ago I took Feldene with great success but low and behold I got a stomach ulcer!!!! No more major drugs. I take small amounts of aspirin and make sure I have food in my stomach.

I tested positive for the HLA-B27. I also have RA, OA, FMS and more. My Rheumy doc tells me that the Humira I take should take care of the AS. I have had horrible back pain these last few days (and do every so often) so who knows?

I have AS-ankylosing spondylitis. In women it most commonly presents itself in sacral spine/hips. It is inflammatory disease like RA,but in areas not typically seen with RA. (RA affects other joints and sometimes cervical spine-neck.

This is not to be confused with spondylosis,which is osteo of the spine,not inflammatory.
Also do not confuse this with spinal stenosis which is narrowing of the spinal canal,also osteo not an inflammatory disease.

In other words,ankylosing spondylitis or spondylITIS is not the same as spondyOSIS or stenosis. (ITIS refers to inflammatory,OSIS refers to osteo)

You can have all of the above or any combination,or just one. OSIS-osteo has localized inflammation,it is not systemic.

With your bowel,bladder,nerve problems,sounds like a much nerve involvement maybe from arthritic changes in spine or vertebrae causing pressure on the nerves. You may have to have nerve testing done to determine this.

Hi Star.i just wanted to see if maybe i could help you out with AS question.I suffer from AS mostly in my back and neck,i also have RA and fibromyalgia,so ifeel your pain.I'm in PT for my neck,bone spur's.This will be my second surgery.The pain from AS is worse than the RA and Fibro put togather.My ortho wants me to get blockers for the pain and i'm trying to deal with more than 1 disorder so not sure if i can help or not.But i can honestly say that if you have a pain dr. you may want to look into it cuz it's a very pain disease,and get's worse with time.I'm here if you need me.

I went to the Dr yesterday and she is setting up another appt with a new reumy for me. We already know I have FM but she knows I have something else too. I have terrible pain in my neck and also in my hips. I think my lower back and my hips is the worst pain. Its terrible isnt it? As I wrote in my first post, my grandma had AS severly and I seem to have all the same symptoms. I am miserable at times, as I am sure you are too.
Can I ask what medications they have you taking and also did you test positive for the blood test?
Thanks, I will be waiting to hear from you..

Hello, I was just diagnosed with Ankylosing Spondylitis after 9 years of pain and problems. If you would like to chat more let me know. Take care, Pattie

I would love to chat with youl... Thanks
I would like to know how they found it and what symptoms you had.. Its not a real common thing so any info you have would be great.
Thanks so much.

Hi Star, you replied to me after I replied to you about Ankylosing Spondylitis. Would you like to email me? I can reply here but then I might not see you right away on here. Anyway I will try to make a long story short till we can chat. I am 54. 9 years ago, January 2000 I started with horrible body pain. I have been thru 4 rheumatologists and they all thought I had RA, but my blood work never showed anything. I have not been to a doctor for about 4 years for it. The town I live in just got a new rheumy, first one ever here, and I went just to see. I love this doctor, He spent so much time with me. He has determined I have Ankylosing. I have neck, back, lower back and hip issues. He found on xray that the sciatic joint is bad on one side, that is why I have so much lower back pain on the left. I had both hips replaced within the past 9 years. They did a biopsy with the second one and found inflammation, sign of AS.. My neck is still all the time, I sleep lightly because all movement when I lay down hurts. He thinks I have a mild case of AS, whatever that means. I have not found a med to help yet, we are just starting on different ones. No pain meds help, they just make me loopy. Please write me, my email is mlp1954@yahoo.com (that is MLP1954@yahoo.com) I am in Michigan, where are you? Pattie

I have an advanced case of Ankylosing Spondylitis. I do not know if you are still looking for info on this or not.

Mine is in my entire spine causing herniations, bulging disks, bone spurs, and fusion. It has also spread to every joint in my body so that in a bone scan, all joints show up with extreme white - indicating high levels of inflamation. They are all degenerating at different rates and cause different types of pain and problems.

I had been diagnosed with fibromyalsia prior, degenerative disk disease, and also written off by many, considered that it was all in my head, chronic fatigue and more.

If I over due things, I will have a severe flare up where my body simply shuts down every 2-4 minutes and I sort of pass out/fall asleep immediately and then drag myself "awake" but it continues sometimes for days and even in my sleep I feel this falling off sensation or dropping into a deeper state all the time. When I was pushed by a Physical Therapist during rehab from having a disk in my neck fused and the spinal column opened up because i suffer from narrowing of the spinal column in my neck and low back too, they kept telling me to excercise more in the pool and it wore me down that I could not function most of the winter 2 years ago. I also then caused a eye disease that preceeds the dangerous one (can't think of the name right now) but my eyes felt like they had sand in them and were tired and dry.

I now can function thankfully due to my infusions of Remicade every 6 weeks. I still have a lot of pain that is somewhat controlled by pain meds & other meds, and still can experience flare ups - sometimes I know the reason and sometimes I don't.

I am limited in activities, need a ton of sleep, & require help for normal household chores. I could do some of them but would end up in pain and so exhausted that I would cause myself to shut down for a week or so to recover.

I have not found anyone who has it in their whole body like i do but there is an Anykylosing Spondylitis website, research promoter and fantastic association called Spondylitis Association of America at www.spondylitis.org that everyone with it should join.

Hope this helps.
AM

I have this also and have learned that good posture is a must. Even though exercise may hurt, the three back muscles that line the spine must be kept strong. If not your back gradually curls and makes the problem worse. You can not affort back strain.

AS is mentioned as one of the conditions LDN addresses. I have had a STIFF lower back for probably 50 yrs and don't know if it's AS or osis...I have OA as well.

[This Message was Edited on 10/17/2009]

and some with AS are taking it. Starting with .5mg and going slowly. Time will tell.