Who has ankylosing spondylitis?

[CathyO]

HI all- Checking to see who all has ankylosing spondylitis?  I think there's two people here with it.

Can you or do you have AS and Sjogren's? And something else?

My rheumatologist is testing for this now. Have some back pain, achilles tendonitis,shoulder pain, bowel issues. ANd for Sjogren's, the dry eyes, dry mouth, paratid gland infections. For thyroid, odd tests, positive for Graves' antibodies. FT3 and FT4 and TSH are in "normal" levels.  Had 4 different bowel infections, including the K. pneumonia bacteria. (5-7 years ago though)

My Sed rate is normal, as always. SSA and SSB are negative. ANA negative.

My xray report (10 xrays) came back "ok" per report from hospital. I thought it was an L5 issue, but the report says L2? (Chiropractor's xrays showed L5 compression. Hospital just sent me the report not the xrays).

I'm going in on Wed. for the spinal epidural. I'm hoping this fixes my back pain (4 months now)

Is there a way to definiltey prove I DONT have SA? I read that the normal sed rate was possible. And that xrays could show as normal. I haven't had a MRI on my back or the HLA-27 test.  I don't have any fever or weight loss or uveitis. Back pain is incredibly worse sitting in a chair at work, a kitchen chair or the car seat. I have now a cushion from physical therapy that helps a lot.

If you have it how and when were you diagnosed? By what doctor? Did you catch it early?

[Joe S.]

(((CathyO))) I am sorry to hear that you have AS. I had a friend with this many years ago. She was a single mother and her daughter was a playmate with my older daughter. She became agoraphobic and left her home only for doctor visits. Her Daughter ended up staying home when her mothers sister left. 

[CathyO]

Hi there- well I'm hoping that I don't. Trying to read up on it. We'll see!

[amberjolie1]

My husband does.  He was diagnosed at 23 by a chiropractor; the docs kept looking into bursitis and so on, but the chiropractor suggested testing for the HLA-B27, which he was positive for.  I have no idea what any of his other bloodwork showed or didn't show.

He's been complaining for awhile (past few months) about a very dry mouth, so I've been wondering about possible Sjogren's for him as well, but he hasn't currently pursued it.

I recall seeing an article in a magazine written for those with AS (I think it's published by something like the Anklyosing Spondylitis Association, or a group with a name like that) that mentioned Sjogren's in association with AS.

Weird that both of us have AI issues, but different issues (although perhaps he may join me in the Sjogren's thing; we'll see).

[SarahD]

Hi cathyO, I've just joined the board as I am thinking I probably have sjogren's given my increasing collection of weird but it would seem related symptoms and I have AS.  I was diagnosed 11 years ago at the age of 24 and i had been experiencing symptoms for a year or so before that.  I haven't persued the sjogren's with my rheumy yet, even if they say i don't have it based on whatever tests they run I am still pretty sure I do have it, the recent addition of the constantly burning tongue has tipped me over the edge!  I am positive for HLA B27 but otherwise my bloods for AS always come back fine, even when MRI's have shown massive inflammation in my hip and i've been unable to walk my bloods show no inflammation so i won't take it as a definitive diagnosis or not if blood test are the only thing they do.

The best resource and support of AS is Kickas.org, its a place very similar to this one, it was a god send to me in my early darker days of coming to terms with and trying to get the AS under control.

All the best, Sarah x

[sarahjane]

Hi
I have family members with AS and Myasthenia Gravis. As my bloods are all completely normal at this stage despite a deluge of symptoms my Rheumy is holding off on a diagnosis of SjS. Because of the family history however he is keeping a close eye on me. All the best for your dx