Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New boy on here, and almost reached a diagnosis.

Hi all
I've gained a lot of info from this site over the past few months and would like to thank everyone for their posts.
I'm 37, frmo the UK, and have had back pain for the past 5-7 years. This has got much worse in the past 12 months and now also affecting my hips and the way I walk.
I paid to see a private rheumatologist and have now been transferred to the NHS. I have had years of being told the xray was normal so....
My current rheumatologist is very good and gave me a complete physical and took time to listen to everything. I had the routine bloods (although she didn't do a HLA-B27 as I think she finds it useless) and a lumbar spine and pelvis xray which I went for the results today.
She says she's 95% certain I have AS due to joint stiffness, symptoms, history, spinal flexion problems etc. The xrays show hip space narrowing and mild degeneration, a "flat" spine, although nothing else. She did say the SI joints we "more or less ok". I'm now awaiting a full spine MRI and have a rheumatology physio appointment next week and she has already referred me as "AS".
I've started on very strong NSAID and stomach protector, although NSAIDS haven't really done much before.
The main problem is with my neck. Its very stiff, painful and gets me down. My back and hips are also pretty bad. Most days I feel about 90 years old. Some 90 year olds are better than me! I guess you've heard and felt this many times before.

The night time is ok up until about 4am, when I start stirring with aches and stiffness, and mornings take me ages to "get going". My other joints such as knees, hands etc are also mildly painful and stiff, is this normal for AS? By the way all my bloods were ok. I also had a DEXA about a year ago which showed oesteopenia (pre oesteoporosis, thin bones).

I've just been reading a study online regarding MRI's and plain xrays in detecting AS changes which showed that in patients with active AS only 6.9% of the participants had xray changes compared to 96% on MRI, amongst the same group. So maybe something will show up on the MRI. Is the "flat spine" a symptom of AS.

Thanks for any comments and info.

Lee

Welcome Lee. I'm 37 as well and have some of the same symptoms. In answer to your question about having mild pain in your knees, hands, etc., yes I do believe that is normal. It certainly is for me.

Hi and thanks.
The worst parts are the neck, lower back, buttocks etc. But I also get mild aches in the knees, finger joints and ankles. Sometimes it feels like I'm walking on 2 sticks. That's the only way I can describe it as if there's no cushioning or soft bits at all from my back downwards. Also standing in 1 place for a while is difficult.

Thanks
Lee

WELCOME, Lee:



I think physicians in UK are obligated to do the B27 testing if back pain is present, but if already convinced AS is the culprit (in which case NSAIDs should have had some effect), this may be a moot issue.

The thing is, by 7 years there should be some pitting or sclerosis of SIJs and by Your age, also--however, AS is different in every person, so perhaps You have escaped some of the permanent skeletal damage.

You might 'nuance' a diagnosis from the information in my signature "Important AS Resources" under diagnostic help.

We all have aged spines and feel like 90 year-olds. My dad just turned that age and guess I would not trade every aspect with him--but wish I had his pain-free spine!

CAREFUL with those NSAIDs--first (bleeding) sign and STOP them!

HEALTH,
John

Any joint that contains an enthesis (every joint contains an enthesis, well, almost every joint) can be affected.

When the doctors have asked me which joints are the most affected, my response was usually, "Well, my elbows have been pretty good."

I think that got the point across better than almost anything else. And it was direct and to the point. Short and sweet, but summed it up well.

The flat spine? I know when I took yoga class 15 years ago, they kept trying to get me to bend at the thoracic area and I couldn't; they couldn't even get my spine to do that and that seemed to surprise them.

As for the neck, OY! don't even get me started. Right now I'd say that's my biggest problem as the Humira has really helped my SI. My neck and SI have been two of my biggest problems, but my wrists and feet have been a big problem too. My knees are a bit of a problem, now on Humira, its mostly OA left. My rheumy thinks now that the Humira has the inflammation dialed back, a supplement might be able to work on the OA in the knees, hands, etc; worth a try.

Welcome Lee. I was just diagnosed in June and just joined as well. Like everyone else said, that feeling of being 90 is normal. I'm only 28 and I feel like that constantly. I work I my feet in retail all day which makes it hard. I would suggest talking to your rheumatologist about a Tens Unit. You can wear it all day if needed and it helps so much with back and neck pain. The waking up thing has been the same for me for some time as well. Again, the Tens Unit helps if you use it right before bed with heat. I hope everything works out for you.

Thanks for all the replies.
I'm not exactly sure why the rheumatologist hasn't done the HLA B27 test but she did do all the other usual bloods. To be more accurate the severe pain has only been around about 18 months, but I've had minimal aches and pains for the past few years. Maybe the SI joint changes just are not visible on xray yet? She did say the SI joints were "more or less ok" but I didn't have chance to ask what that exactly meant.
The forward flexion test and hip tests were very positive according to her though, and the rheumatology physio appointment next week may reveal something else.
Does anyone know if the joint space narrowing on both hips is related or just a coincidence?

Thanks
Lee

Hello Lee,

Welcome to Kickas, glad you found us. A lot of the symptoms you describe for pain sound very familiar, hopefully you can find some solutions to help you out.

My advice is to continue searching and learning, it can only help. Look into what meds there are as well as diet and alternatives.

Best to you,

tim