Yesterday my neurologist came to my house and as we discussed all the symptoms of AS..I mentioned to her about the "Lab Tests Online" ( AACC ) site which I had been researching. She was super interested as she is still learning about this awful disease. In the site I found mention of HLA-B27...which can actually be tested for at home with Urine analysis sticks...the complete test kit not just the one used for diabetics. Apparently if your Urine test comes back positive for Leukocytes it is an indication that you may have HLA-B27 which is the catalyst for AS. So when I'm away in Australia, I will test my kids and grandkids...for the antigen HLA-B27 as it is a genetic problem. Has anyone else got any more info to add to this ?
Hi Gloria,
Not sure if you are asking for information about HLA-B27 or Lab Tests Online. HLA-B27 is the antigen found in the blood typically which correlates with symptoms of AS but it's exact role is not really sure. Obviously it is possible to be positive for that antigen but not have AS. And I also understand that it's prevelance in the general public is also dependent on race, sex and other factors. Some groups have more incidences of being positive than others without the disease being present. So HLA-B27 is just one of the pieces of the diagnostic puzzle without being definitive by itself. Sorry if I misunderstood your question. If you knew all this please just disregard. I will say though that I remember the test to be a blood test rather than a urine test. I don't remember ever doing a urine test for my rheumy.
I will be interested to hear how this develops. As a nurse we sip stick urune regularly looking for leucocytes, but that only tells us the patient has a urune infection. We then need to send urune to the lab to find out which organism. As HLA-B27 is a gene, and you can have it but not get AS, I'm not sure it would show up in urine. Many family members may not want to know what only possibly lies ahead of them, it could cause them unnecessary stress. I see to recall figures of between 8-15% of your family may go on to develop AS.
Hiya...I'm a nurse too..( 40 years) Having Leukocytes in the urine generally does indicate infection of some kind you are quite right...often urine tract infections, so yes we ask the lab to look for the bacteria...but not usually asking for HLA-B27....but with AS the patient will show leukocytes in the urine no matter how many courses of antibiotics they take.The urine test still comes back positive for Leukocytes..I have experienced this myself. After so much research on this I found a site which echos my thoughts on this. If you co into " Lab Tests Online" search for Leukocytes...it will give you all the info on HLA-B27...which as I mentioned is the catalyst for AS....I agree that some people may not wan't to know about this as stress can cause them added worry...but whats worse...knowing you have AS and can get treatment for it...or not knowing and drive yourself and others crazy wondering what this disease is...one of the comments I have heard several times is...I thought I had cancer...now I can put a name to what I DO have...and fight it in my own way as best I can..Maybe together we can come up with more information on this...I'd like to learn more as here our patients nor doctors know much about this disease. I would dearly like to cut down the waiting game for diagnostics...many of us here in this wonderful forum went undiagnosed for decades....that's so sad. If we can help somebody else along the line..it would be great. G
Hiya..yes it's normally a blood test in the "West" but here in Indonesia I do not know of tests for HLA-B27...my neurologist had never heard of it...so we a bit behind the rest of the World...So I had some urine analysis sticks which I got from Australia to test our patients for other things and then read about the HLA-B27 and testing for Leukocytes which are indicators of possible AS...so I tested myself ( again ) and it was positive...and have been following it up on the site I mentioned...But my post has been taken down due to my mentioning another site...hope they restore it asap. It was so helpful. I have had urine tests and blood tests and they always come back pos for Leukocytes....even over a two year period and after anti biotic treament too...so I must be onto something fairly new...new here that is....look forward to hearing from you again...thanks..G
How very interesting!
Maybe an M.D. on the horizon?
Hugs Gloria,
judith
Thanks Judith...I am trying so hard to find a link to this terrible disease. Here in Bali, we have patients who have symptoms of AS but no way to test their blood or urine. I have tested some already and found positive for Leukocytes when there is no other infection present. I did read about this somewhere but can't find the reference now...only what I posted which was taken down. If we could get some data on this..it might help people in developing countries like Indonesia for example.
I'd really like to get some positive feedback from someone who is encouraging in the medical field..and doesn't think I'm mad. Hugs back to you....G
Here is some of the info from the site I mentioned ( since taken down)....and I quote...".HLA-B27 "At a glance"...Overview of the HLA-B27 test used to determine whether someone has human leukocyte antigen B27 on the surface of their cells to help assess the likelihood that the person has an autoimmune disorder associated with HLA-B27 ( 11/9/2015 ) " wish I could direct people to this site....but I guess you could search for yourselves...I just wan't to help others...G.
Found it simpy by searching Lab Tests Online. Good site to know for any number of questions someone might have. Thanks Gloria.
Thanks..Peter.. I'm so glad it could be useful...I found it very interesting but I wont post a link anymore...sorry moderators....promise...
Hey Gloria.. every body
We are able to send links via the private message system.
I have had others contact me for info this way and I have been able to respond.
What I do not know how to do is initiate a message...
but I have an idea how to get assistance. .purposefully type a link which will kick to the moderator and ask.
Meantime, I am USA...world famous medical universities and other research I know how to access...just send me the questions and I will research and send you what I learn.
Hugs, big hugs to all
judith
Hi Judith...yes indeed these protocols are ideally practised in the "west".
We would obviously not have the availability of such asessments here..I wish. All we can do in our small clinic is consider amounts of bone damage/muscle spasming and general health history of the patient over a length of time... and our only option for these mountain folk is medication for inflammation e.g. Naproxin, Ibuprofen, Paracetamol and Piroxicam etc...and monitoring side affects as best we can. There are no Rheumatologists here within a 4 hour drive...and only one Neurologist. Both of which, if they were accessible, would not be affordable to our patients....so we are "working blind" to a certain extent. X Rays are sometimes an option but again very expensive.
Thankfully we do not see very many patients who have symptoms of AS,,,they see serious illness as "black magic" or maybe the Gods are angry...Being involved with health care in a developing country is fraught with frustration and despair....So we do what we can with what we have available...miniscule in my book....wish I could do more. Thank you for your post Judith...this is an eye opener..I will try to refer it to our health department but I doubt that their eyes would ever open....lol....Hugs back...G
Thank you so much Judith..I did reply but my post was taken down again..I did not post any links...and don't understand why the moderators took my post down...Maybe they've had enough of me...I spose I had better change the subject....Many thanks for your help...Maybe I had better keep my posts only about myself in future...dunno. G
Hi Gloria...
look at my dumps of info...I so want you and your doc to be armed with info. I will run down anything you need to help.
If you copies direct from internet, you have to retype all of the words you can click on...
You are my favorite nurse!!!
Chin up!
Hugs,..super big hug
judith
Hiya angel...I've printed out everything you sent and will keep a copy and give the rest to my Doc....I wish I was still nursing..I miss it so much. Since I've had this AS, I cannot be in the clinic but try to help in other ways....with you to guide me, I am sure we can make a difference to so many. I'm so grateful for your help...and you're my favourite angel...xx
Hi both,
I have deleted the posts above which were copied and pasted from other websites. If you want to add links to posts they will be approved if they are to reputable sites but do not copy and paste like this as it can cause copyright issues. If any links are not suitable and get removed you can use the Private Message service to exchange them. See below FAQs for more info. Lab tests online is very easily found by searching Google for the term and note there is a US and a UK version of their site.
https://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts
https://patient.uservoice.com/knowledgebase/articles/398331-private-messages
Regards,
Alan
Hi Alan,
Thank you...I can not figure out how to initiate a private message...I trust you were able to see it was to help the people of Bali...I do not desire to make problems for anyone.
My sincere apologies
judith
Hi Judith,
As the FAQ states just click on the envelope under the username to the left of one of their posts. You can also just state other site names without linking, for example I guess one of the sites you were quoting was KickAS the link to which is http://kickas.org/
Alan
So, our wonderful moderator taught me how to private message...ya gotta look for the envelope near the person you want to send a private message to.
Dummy me was trying to figure it out from my own page. chuckle chuckle It doesn't help that I do this on my wee cell phone and mobile is a whole other can of worms.
So, look by your name and you will see a number appear, click on it. Patient also sends you an email so you know you have a private message!
Oh, but you are...just on the research end of things
hugs
judith