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Old 01-03-2006, 05:02 PM   #1
Join Date: Jan 2006
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sanns29 HB User
Anyone with Ankylosing Spondylitis?

Thanks for reading!

I have been sick for three years, recently diagnosed with AS. I do not have the gene associated with AS. I have been to many specialists. For years doctors did not know what was wrong. Did it take you a while to be diagnosed? What were your symptons? Did you start out with a golf ball size protrusion in the clavicle? Did you suddenly get ill or was it gradual? I've been questioning the diagnosis. My pain has always been in the chest/clavicle area. I have been on many medications for AS, none have worked. Should I be concerned? I was convinced that I was exposed to Lyme Disease while vacationing in CT but LA doctors looked at me like I was crazy. I have done a lot of research on AS. Please share your personal experience with AS. Thanks so much.

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Old 01-03-2006, 05:58 PM   #2
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zephyrqueen HB User
Re: Anyone with Ankylosing Spondylitis?

I too was thought to have AS but do not. I have DDD and Fibro. Was also thought to have Lupus as well. The reason they thought I had AS was because of ongoing back pain and Sacroiliac pain that was not going away with conventional treatment. It also rotates from one place to the other. Some days it was in the back and some days it was my hips or about my SI joints. Also they do a lab test called HLA-B27. Although this is not a determining factor. Although my HLA-B27 is positive I'm still not possitive for AS. They do an MRI of your Sacro joints and Lumbar to check for any Anklyosing of your sacro area or spine. That is usually how they determine this. Also it can be determined on an X-ray as well. It's what they call Bamboo spine. The vertebrea will eventually fuse itself together causing what they call a bamboo efect.....hince the term, bamboo spine.
My sacro iliac spaces are narrowing but are not anklyosing. No one knows why. I still have great pain in that area and about my hips. As well as my back. I'm facing total disk replacement for DDD in my spine at this time.
This disease usually has morning stiffness but goes away later in the day. Also it causes back pain and stiffness at night. I'd do more research on it and seek a second opinion. This is more common in men than woman. Although woman can get it, so don't let a doctor tell you they can't . Early detection and treatment is very crucial in treating this disease. There is no cure but it can be treated with Physical Therapy and Medications. One of them is Enbrel. You want to make sure that you DON'T have it. It's a very cripling disease of the spine. Like I said, it will eventually fuse the vertebrea together at some point, causing complete immobility. It's painful but once the vertebra fuse it won't be as painful. Hope this helps.

Old 01-03-2006, 06:05 PM   #3
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jimmyhonda HB User
Re: Anyone with Ankylosing Spondylitis?

Ankylosing spondylitis is a painful, and progressive illness that affects not only the spine, but other joints (hips,neck,shoulder) and internal organs like your eyes, and your heart.

I am wondering how did your doctor came to the conclusion that you have AS? Most people with AS cary a HL-B27 gene. If you ask your doctor to do a blood test to see whether you carry this gene and measure the level of inflamatory in your blood, then most likely you do have this disease. X-ray helps to see whether there is fusion of your spine taking place.

"Spondylitis Association of America" is probably the best and a very informative site for people who suffer AS.

With AS - what i learn from my experience is try to be active as possible - BUT you MUST AVOID LIFTING HEAVY OBJECTS. You see, when I was young, my AS was mild - it comes and go, whereas my brother/and sister was moderately severe. Over the years, I was a show-off, carrying heavy objects like heavy gardening pots, and work in a fast pace production like which involves carrying objects. Therefore, my illness progress the stage a lot worster than my brother and sister, and now it affects my hip joints.

By active, I mean, taking swimming classes, and do simple exercise every day, but don't over do it.

Old 01-03-2006, 06:26 PM   #4
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zephyrqueen HB User
Re: Anyone with Ankylosing Spondylitis?

Question for you. I was told that just because my HLA-B27 is positive that doesn't mean that I have AS. That is what my Rheumo told me. Even though my Sacroiliac Joints are narrowing. I have been getting Floroscope injections into them just recently. I just had my second set of bilateral Medial Branch Blocks last month. Now they are talking of burning the nerves of at my S1,2 and 3. I've had back problems, Sacro Iliac problems for years. I've also had eye problems too. I had to have silicone plugs placed in my tear ducts last year because my eyes were constantly dry. This did help them stay more lubricated and keep them from being so red......due to the arthritis. I still think I have AS. I also have had two positive ANA tests....Anti Nuclear Anti body tests. I also get tightning in my chest as well. Not that often though. This is also a sign of AS as well. It causes tighting of the rib cage. Specifically the intercostal muscles between the ribs. I also have SEVERE neck pain as well. Would you seek a second opion if you were me?

Old 01-03-2006, 07:44 PM   #5
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jimmyhonda HB User
Re: Anyone with Ankylosing Spondylitis?

I am sorry to hear you are going through this, but firstly, I like to say I am not an expert in treating AS, but if I were you, I would definitelyseek a second opinion. Over the years, I have seen 3 rheumatologists. The first rheum, did nothing apart from just measuring my spine and my chest expansion every visist and bah bah bah. I was so annoyed by this, that in 5 years time, I have stwitched to another rheum, who told me that my hips are severely affected. I was shocked when I heard this news. How could my illness have gotten much worster? didn't my first rheum do anything to halt the progression? My second rheum don't know what to do, so she sent me to the hopital to see another rhuem.

I found that seeing a rheum at a public hosiptal is far better than at a clinic. The test results/x-rays are done quickly, and you get to have second opinions from different doctors. Wheras at a private clinic, they lack resources, and if later found that your illness is severe they would put you in a public that can take more than 3 months waiting period.

It is also true that because you carry HLB-27 gene, you may not have the symptoms of AS. My younger brother tested positive for this gene. At the age of 28, he has no signs of pain back or stiffness.
It is also true that women present differently than men, but usually not as severe.

From the sound of your symptoms, they look like AS to me. Symptoms like stiffness of your neck and spine, and unable to bend down to touch your toes are signs of AS. Currently I am unable to swing my neck freely like I use to - it is sooo bad, that drving a car I need to rely on additional mirrors.

As for your eyes, it took awhile for my doctor to know what was wrong with me. My first doctor gave me drops - but it didn't work. After 3 days, my eyes was so bad, looking up towards the light or the sun would sting me. So when I got back to the doctor, he was scared to death, because when he looked at my previous record that I have AS, he ordered me to see a specialist that day who gave me specidal drops to halt my iritis.

Reddness of your eyes could also mean that your doctor is giving too much of a dose in your medication. So, let your doctor know about this, and ask him to lower it down.

Again, I am sure the spondylitis Association of American site would be more helpful that I am.

P.S - did your doc recommend you to try a new form of drugs that can possibly halt the progression of AS? Unlike NSAIDS which only mask your symptoms, the new drugs which is developed through biotechnology has been successful to treat Rheumatoid Arthritis, Chrohn's as well as AS.

I am fortunate that i am able to experience this drug soon because of gov funding. It is expensive, and i heard that people do well in it.

Last edited by jimmyhonda; 01-03-2006 at 07:52 PM.

Old 01-03-2006, 08:25 PM   #6
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zephyrqueen HB User
Re: Anyone with Ankylosing Spondylitis?

Actually my Rheumo doesn't think I have AS. That's the problem. So I haven't been given anything for my symptoms....other than Ibuprophen I've had Iritis since I was in the Army back in 96. I had to be medically discharged because of my back and Fibromyalgia. Which I still wonder if that isn't something else. Or secondary to AS or everything else that's going on. I couldn't even use eyedrops because they stung my eyes. My eyes were to sensitive to the protein in them. I'm also VERY sensitive to light.
All the symptoms point to AS but my Rheumo says it's not. Even though he said my neck shows signs. I just don't get it. So in the meantime I suffer. I flat out told him that 90% of the time that a persons RF will show negative and the Sed Rate will be high. That is a clasic sign of this disease. He didn't want to hear that. Far be it from me to actually KNOW anything I've only been studying this for 8yrs now!!! There are days that my back is so stiff I can barely bend over to brush my teeth at the sink or days that I can't even put my shoes on. Then there are days that my neck hurts so bad or so stiff that I can't even move it or turn it. Which makes it difficult when I need to turn my head when I need to turn it to check for traffic when merging on the freeway. Know what I mean? I'm just so frustrated. I can't work and I have to rely on the VA for my healthcare. ..or lack of. My Rheumo appt. was scheduled for Feb. but was canceled because the doc wasn't going to be there and was rescheduled for April!!! AAAAAAAaaaaaaaaargh!!!!

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Old 01-04-2006, 12:28 AM   #7
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Lady Olivia HB User
Re: Anyone with Ankylosing Spondylitis?

Hi Zephyrqueen,
I thought i might just jump in here and let you know of my condition as you sound very similar to me. I was diagnosed firstly with spondyloarthropathy because I left that condition with no medication except for the random celebrex I developed AS in the neck and thoracic spine. My rheumy didnt pick up on the AS a lung specialist at the local hospital did after I had a chest xray for an allergic asthma attack that had put me into hospital. Even after I asked my rheumy could I have AS he said no then said come stand up and I will see. he made me move my arms up and down and turn my head simple enough!! and then said yes you do have AS. When I first went to him to find out what was wrong he asked me to touch my toes and i couldnt even reach my knees I had bad knees lower and upper back pain and my shoulders were stiff. Sometimes I couldnt even brush my hair or put my shoes on. I have my daughter help me when i need my legs shaved as i cant sit down low enough to reach my legs. I have the HLA B27 gene and he also said that you can test negative to this gene and still have spondyloarthropathy. So maybe you are at the same stage I am. I wish you were in Australia where we have free medical then you can see a rheumy any rheumy you want. If I want a new one I could go see one next week. It really makes me so angry when I hear of the struggles that you guys have due to your medical system.
I am sure with the right person they will diagnose you properly. Also I went undiagnosed for ten years before I saw this new rheumy five years ago and he changed my life. The first rheumy actually asked me what i think i should be tested for!! This is your health your life so dont take any chances with it. Ask questions demand answers and make sure you never leave without understanding everything.
I wish you all the best
Take care

Old 01-04-2006, 06:49 AM   #8
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zephyrqueen HB User
Re: Anyone with Ankylosing Spondylitis?

Thanks Olivia. I will try and demand more from my Rheumo. If I hadn't been more insistant on my back pain and isistand on another MRI, they would never have found the hemangeoma on my spine. My Rheumo kept telling me my back pain was due to my Fibro. I told her it WAS NOT!!! I told her I hadn't had a flare in months and my back pain was localized to one area, particularly my L-3. Low and behold the Hemangeoma was spoted at the right of my L-3. Hmmmmmmm...... You are absolutely right. No one knows your body better than yourself. It's just that when I try to tell them anything I get blown off. Once you get labled with Fibromyalgia they try to blame it all on that. Every new thing that pops up pain wise.....It's Fibro automatically! I'm seeing my Orthopedic soon for my shoulder. I'm going to ask him about my back as well as my neck. I'm tired of messing with Rheumo and the run a round Thanks again.

Old 11-06-2006, 01:07 AM   #9
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singel352000 HB User
Re: Anyone with Ankylosing Spondylitis?

I have just been diognosed with AS. I know I have had it for years .
Also Extensive ossification of the anterior longitudinal ligament C2 & C3 also between C5 C6 L4/5 AS I am in Australia do you know any good sites I can go to to get some more infomation . My DR has refered me to a specialist in Canberra. I am trying to get on a pension and this is the road he wants to go down by the way my age 62 thanks for any info.

Last edited by singel352000; 11-11-2006 at 06:16 PM.

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