Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group new & confused

Hi all.
I am new to this so please bare with me.
My daugher who is just 13 returned a positive blood test for ankylosing spondylitis this week.......first time I had ever heard of it.The news was given over the phone to my partner who didnt ask the right questions!
So, as you can imagine I googled it and freaked out and wondered what to do and freaked out some more. I then went to the Doctors to ask for more info but not sure if I took anything much in as I spent the whole time crying.
He said not to focus on the bad stuff I had read and we will need to go and see the specialist for a definite diagnosis. Apparently the blood can come back positive when its negative...false positive? Agh, I dont know?
So, without a specialist diagnosis I am pretty sure from what I have read that AS is exactly whats going on here because she has had two bouts of a bad back..the first was six months ago and it lasted about 7-9 days, it was pretty awful and the first couple of days she could barley walk.
The doctor put it down to carrying an excessively heavy bag at school and due to there being no sporting injury, no real 'reason' for it I agreed.
This time it happened two weeks ago and the physio isolated the sacret illiatic (spelling???) joint and she is still in pain....walking much better but still in pain.
So its been two weeks off school and she is going back for a half day tomorrow on advice of the principal (she has a bad back and could sympathise).
I guess I am hoping to get some advice

Welcome to kickas, I hope responces here will help you. As a parent, my heart is breaking for you, and you will find many of us here. Have you looked back into your family history for familiar background with AS? I do hope you have a good Rhuemy in mind to get your daughter to for proper diagnosis and care. Take a deep breath, and try to take one day at a time. It's not sealed in stone yet. I have 2 grown children,26 and 28 who refuse to be tested even though they both have had signs of the desease since their teens. IF I had known my proper diagnosis back then, I would have imediately had them tested. You are one step ahead of the game and heading in the right direction to help her early on.
We are all here to help, so ask away
Cindy

Hi Ankymum and welcome to KA.

Naturally, you are worried for your daughter if she is having such painful symptoms but you are not there yet and it may help to understand a few things prior to a specialist appt.

First, there is no definitive blood test to determine the diagnosis of Ankylosing Spondylitis. If she tested positive for HLA B27 - this means she has a genetic susceptibility only. 8% of the population is positive and remain healthy and only a small percent go on to develop AS.

Second, it is very good that your family doc is even exploring this possibility, they usually want to see low back pain for > 3 months duration before considering AS. A rheumatologist will be able to do a proper exam to rule this in or out.

Lastly, if it turns out that she does have juvenile AS, it will impact her life yes, but it won't mean the end of school or of a meaningful career etc. so for now try to take things one step at a time and see where you are. And if she can hobble enough to get around school, I would tell her to take it easy but would still encourage her to go.

I really hope that your daughter does not have AS. If it turns out that she does, you have a whole bunch of moms here who will be able to help you through how best to help her.

Best wishes for you both,
mig

Welcome to the board. I had a flare during high school that was diagnosed Rheumatoid Arthritis. My parents were able to talk to the school and for that year, I missed about half of my morning classes, including orchestra, but nobody counted the absences against my grade. After being able to rest when I needed, I was much better my senior year and even managed to be in the Minnesota Youth Symphony and have a part time job. A good rheumy is important as well. I had very minor flares and pretty much ignored my symptoms after that for 30 years, until last year when I flared with a vengeance.

Micki - when was your diagnosis changed from RA to AS?

welcome here! as the doctor said, try not to expect the worst. if she has AS there are new drugs and other things she can do to manage things. this is a good site for help through this all.

I was diagnosed JRA, seronegative for rheumatoid factor in 1979. Then when I finally went back to the rhuemy (same one) after 30 years and knowledge of my dad's HLA-B27+, it was a no-brainer for doc to diagnose me AS.

Hi Ankymum - Welcome to the KA fammily. You will find a wealth of help, support, information and friendship here on KA plus a wonderful collection of moms.

I second Mig in the AS info, being HLA-B27 positive is not a definitive DX to AS...there is no actual 'test' *for AS. I am B27 negative, DX 2003, definitive DX via MRI Saggital STIR scans. There is no AS in my 'immediate' family, though a strong suspician of, for my now deceased brother, and for a cousin, also deceased. Dunno even IF they were B27 positive. Can only remark: Northern race, with positive for strong Viking elements - and tetchy temper!

Welcome. Glad you found us

Molly C (France)
Keeping on Keeping on

Right - that makes sense. My daughter was diagnosed with JRA but a year later they decided it was a misdiagnosis. I don't know what the blood test they used for that diagnosis but they claimed it was a positive test at the time. This was almost thirty years ago so I was much less knowledgeable at the time.

She was in the hospital for three weeks with her leg in traction as a result of knee pain. They never figured out what caused it but I thought it was curious all these years later when I developed RA.

Welcome, AnkyMum:



MENDACITY!

NEVER been a false positive. NEVER!

B27 positive with VERY CHARACTERISTIC symptoms--get her off the starches early enough that she might not be tied to such a strict diet for the rest of her life!

Perhaps You would locate a Road Back Foundation physician willing to treat with antibiotics and anti-protista (Flagyl), if appropriate. Check for candidiasis also.

Important to understand this disease to treat it correctly, and very few physicians truly understand AS--especially someone with absolutely NO EXPERIENCE, claiming false positives! That kind of doctor will through ignorance make things much worse, as they did with me and are still doing.

Get her off the starches as soon as possible--difficult for such a young person and she will need Your help in this--like a child with celiac only even more difficult. Heal the intestinal tract enough that she can tolerate the occasional starch-fest and life will be much easier for her (and You).

Best of Luck,
John