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Old 07-15-2006, 05:40 PM   #1
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Question Anyone with Ankylosing Spondylitis that is HLAB-27 Negative?

I have all the symptoms. The doc said he was 99% sure I have Ankylosing Spondylitis, I had bloodwork done and now they are going to do an MRI and some other tests because my blood showed negative for the gene marker and no inflamation in my blood....
Doesn't make sense because I'm so inflamed that I can't put on wedding rings or straighten my knees.....
Any ideas??

 
Old 07-18-2006, 03:34 PM   #2
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Re: Anyone with Ankylosing Spondylitis that is HLAB-27 Negative?

Hi,

My rheumy recently had me get another MRI due to quickly progressing back pain & pain in my spine. First I had a lumbar MRI which showed stenosis, herniated & torn discs, DDD, osteoarthritis. Then my hips started bothering me and I had alot of pain in my rear and backs of thighs. I also had migrating tenderness & swellings on my skin right over some bumps of the spine.So he had me get another MRI of the sacro-iliac/pelvic region & said he wanted to check for Ankylosing Spondylitis (even though it's not a common disease in women). My MRI's seemed to turn up negative in those particular areas (thank gawwd). Apparenly the disease causes the spinal bones to fuse together causing a bent-forward position (which I do have, but is probably due to the stenosis) I guess he wanted to make sure to rule out the AS. I guess since my MRI's didnt show any fusing I did NOT have that gene test done.

Did your doc do any tests for other rheumatic diseases or auto-immune disease? There are so many that can cause your symptoms.....

 
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Old 07-20-2006, 08:02 AM   #3
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Re: Anyone with Ankylosing Spondylitis that is HLAB-27 Negative?

I also had a neg. result. I was told that there is a small % of people with neg results that still have AS. So i am one of those. I did have several test done before dxing.

 
Old 07-23-2006, 12:34 PM   #4
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Re: Anyone with Ankylosing Spondylitis that is HLAB-27 Negative?

Also, women present differently than men. Men usually begin the problems with lumbar or sacroiliac. Women tend to begin with the neck.

I am negative, however have an autofusion at T1/2 and have another C disc set ready to fuse. My blood work rarely shows inflammation, even when fingers or feet are visibly swollen. Sed rate and ANA are rarely elevated and when they are only just barely into the high range. Now having the CRP checked. Showed once in my life with a positive rheumatoid factor (runs in the family) but never since. Docs are torn between AS or Reiters brought on by Lyme Disease. No real treatment has been done, other than pain or swelling control.

sal

 
Old 07-23-2006, 04:33 PM   #5
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Re: Anyone with Ankylosing Spondylitis that is HLAB-27 Negative?

Hi Sal,

I have AS and am HLA B27 positive. I was wrongly diagnosed for eight years and in this time my spine has fused. I had lower back problems first and then upper back and neck and then the knees and hips. This disease is harder to diagnose in women because they always thought it was a man's disease but now know that there appears to be more women getting it than men. Because I went undiagnosed for so long it attacked my bowel and I am now aneroxic with many bouts of diarrohea every day. This condition if left can kill you as I have just found out. I have been told my rheumy that you can be HLAB 27 negative and still get this condition. My advice to you is to keep a journal of what is happening to you. The most common sign is the arching of the back. I call it my turtle look. I went through all the medications and have now started on remicade which after only two doses has made a big difference to my walking and my posture. I am only 40 years old.
Questions to think about
Do you have upper body weakness in picking things up?
Do you have lower back pain or even just a discomfort or stiffness anywhere in your back?
Can you turn your head easily?
The main one to know if you are affected by AS is Can you touch your toes?
I can get my hands to my knees and that is as far as they will go. It is the easiest and cheapest test. If you cant get below your knees then you probably have AS.
I hope this has helped a little.
Good luck
Olivia

 
Old 07-23-2006, 10:37 PM   #6
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Re: Anyone with Ankylosing Spondylitis that is HLAB-27 Negative?

Thanks so much Olivia,
You helped me a lot.
Since posting, I went for an MRI, the last one I had was 3 years ago, lumbar, it showed the obvious scoliosis as well as DDD, DJD, stenosis, etc....I requested another one of the pelvis/SI area, but they did cervical & thoracic.
Thoracic showed nothing except the tail of my lumbar scoliosis, but to my surprise, cervical showed that at my C5-6, I have a "right sided osteophytic-disc complex which extends to the spinal cord and slightly flattens the right side of the cord. There is a formaminal stenosis on the right at this level."
Because of the scoliosis, they've always chalked up my aches and pains as scoliosis. I will be demanding they MRI my pelvic/lumbar area again as I know for sure the conditions have progressed since the 3 year old MRI.
I'm positive I have AS. I would have diarreaha if I didn't take narcotics, I do get it when I don't take my pain meds.
Lately my hands, feet, knees & ankles have been visably swollen regardless of the bloodwork saying no inflamation. My heels shoot pain up my leg when I stand.
Now that I am aware of the neck issue, that explains my migraine headaches and shoulder pain/knots.
I'm a mess at 33!
My next appt is Aug. 9th, but I'm calling tomorrow about the MRI for my lower areas.

Thanks again!
__________________
Mom of 7yr old
Scoliosis +++
Kidney problems
AS

Last edited by moderator2; 07-24-2006 at 05:33 AM. Reason: pm's and emails are turned off so that these boards remain anonymous

 
Old 07-24-2006, 01:48 PM   #7
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Re: Anyone with Ankylosing Spondylitis that is HLAB-27 Negative?

i have ankylosing spondylitis. i also have the hla-b27 marker. this is how it was explained to me.
when we are still in the womb our immune systems do a kind of shuffle to determine our immunity. unfortunately the shuffle also determines what diseases we are most suseptable to. just because i or anyone else has the hla-b27 marker, that does not mean that i/we will get the disease. it is the reverse for you and all those who do not have this marker, just because you dont have it does not mean that you will not get the disease, it just means that you/ others do not have a high chance of getting it.
hope this helps,

sassykat.

 
Old 07-24-2006, 03:21 PM   #8
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Re: Anyone with Ankylosing Spondylitis that is HLAB-27 Negative?

Hi Trish,
Glad that little bit could help. Things do get better if you have a good rheumy and remember this is your life and health so dont rest until you feel that you have the right person doing the right things. It is so hard to find a real doctor/specialist nowadays. I wish you all the best and if you need someone to talk to just let me know.
I feel so alone with this condition as noone seems to have it out here or they are mostly men that dont want to talk about it. I live in Australia.
Hi Sassy,
Can I ask how the condition started for you and the medications you have tried and how you are going now? I am going through a really bad time with this condition and talking to someone that has it would help.

Take care and look after yourselves.
Olivia

 
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