Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Teenager in pain - need advice from other parents

we went to see paed rheumatologist this week for a follow up appt but no results were there yet - despite blood tests 6 weeks ago and MRI one month ago - they r chasing results up and we r waiting for a phone call - hopefully before the weekend - we were all worked up to be told something the other day - its very frustratin

Yes I'm afraid it is waiting for a diagnoses is the worst bit. I'm lucky I have a great team looking after me and I can see them at fairly short notice.

Kevin

She has had joint problems and aches since she was tiny but bloods always show nothing up to now, she has a schobers sign of 12.5cm according to the physio report who triaged us b4 we got the rheumatology appt. I would say its got worse since then, she now has rib pain too, it seems to spreading really fast, the more I read the more I worry, and dont like the sound of the medications to halt progression of disease due to the affect on the immune system as she has already had numerous pneumonia episodes

Mom to many - 9 kids! good 4 u, that makes me feel optomistic - if u were bad at same age and manage such a big family - its not all bad

I know it must be a big worry for you but don't read too much into what you may read on hear we are all different. As you can see I'm severe but like Micki I've led a fairly normal life despite the pain all spondys are tough we have our moments when we vent and moan like anyone else but most of us go on to have a good life.

Kevin

Things quieted down for a long time. I would have small flare ups post partum and when under stress. I also fatigued easily, but didn't realize it was my auto immune disorder behind it. I just thought I was lazy. Your daughter has the opportunity to learn to listen to her body and not overdo it just because she thinks she "should" be able to.

Thank you for the support Best wishes x

Hi so sorry your girl feels so bad. I have no words of wisdom, just a hug.

Though i was officially diagnosed just 3 years back, i remember having my first flare when i was around 20 or so. But the good fact was that it lasted just a few months and then there was a period where there was no symptoms of pain. I had the next flare around 27 and since then it has cropped up now and then, but never severe till 2008, when it was really bad and i was officially diagnosed. So I hope your daughter gets well soon and hope she does not have a re occurrence of it. AS has different reactions on different individuals.

Finally got to speak to the rheumatologist again today - she told me the MRI shows a bit of inflammation in the tendon, she will arrange physio, and they will keep an eye on things just incase arthritis develops. So, I think thank god its not AS, but came home and typed in 'inflamed tendon back' into google, and whatcame up....AS! what???