Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Newly diagnosed...

I was diagnosed with spondylitis 2 weeks ago and have really been struggling with the news which was very unexpected. I've had symptoms for about a year now (pain and stiffness in the low back in the mornings, and occasional pain and swelling in my knees and ankles and fingers) but never thought much of it because the pain didn't last all day and by afternoon I am usually functioning pretty well. Anyway, I was in to see my GP for a prescription refill and mentioned the back pain in the mornings, was referred to a rheumatologist, and was diagnosed with this on the first visit. I still don't entirely understand how she could diagnose it so quickly - I have not yet had any tests... but she said because of what she found on the physical exam and the fact that I have crohns disease she was quite certain that this is what I had. It came as quite a shock, and I'm still really hoping that maybe she was wrong.... she has referred me to PT through the arthritis centre and I am going to have a bone scan in a week or so which may provide some clarification. I haven't been started on any meds yet but have noticed that a lot of the meds that are used for this are also used for crohns - the rheumatologist said she would like me on humira and she is trying to coordinate that with my gastroenterologist. Anyway, I guess I'm just wondering if it is normal to be diagnosed before any of the tests are done? And also, what to expect with this... what I've read so far is quite scary...

Hi Lindsay! There really isn't a definitive test for AS. They have SI joint x-rays and some blood work to look for inflammation and the HLA-B27 gene (which makes you more prone to AS). However, these are only pieces to the puzzle. I was diagnosed with AS even though all the "tests" came back negative. I was diagnosed based on history and physical examination as well. I had inflammation in the typical AS hotspots. My mother also had it. Could you get a second opinion in the future to verify the diagnosis? Good Luck and I am glad you found this place. There are many knowledgeable people on this site.

Craig

Lindsay, you mentioned knee and ankle pain. I have that as well. Do you feel it in the patellar tendon region in your knee? How about your achilles tendon in your heel? Patellar tendonitis and achilles tendonitis are classic signs of AS.

Craig

Hi Lindsay

I was diagnosed with AS when I was 24. An orthopedic surgeon took one look at my back, listened to my complaints, and diagnosed me with AS in less than 10 minutes. That was after I had spent 4 days in the hospital being pushed and probed by more doctors than you ever want to see in one place. Especially not the places they were pushing and probing. Anyway, the right doctor can diagnose AS pretty quick, so don't discount it because it was fast.

Good luck, and I'm glad you found our AS kickin web site.

Dean

Hi and welcome, nice to meet you. I can totally understand you are feeling so overwhelmed. Maybe just breathe, take it a day at a time. Many people go undiagnosed for years, wondering why they have these aches and pains and IBS or IBD and so on. Perhaps at some point, you can feel that knowledge is power and this information will help you be in charge of your wellness. Reading about the worst case scenarios is too scary. Many people with AS can be active and healthy. You can get a lot of support here so please post as often as you need to, if you want some caring shoulders!
Jan

hi,

my stepfather was dx'ed with crohns in the mid 80s and shortly after that had a good portion of his small intestine removed. but that was a long time ago when there were much fewer drug options. he was on prednisone back then.

for a long time now he has been on asacol for his crohns and it really has helped his crohns tremendously. his doctor also wanted him on one of the biologics but he refused. but he's older and has other health issues. so if your doctor wants you to try the biologics, i encourage you to do so.

and when my stepfather's crohns flairs, his arthritis and uveitis flares too. and when the crohns settles down so does the arthritis and uveitis. it all seems to go together (for him).

his main arthritis areas are the SI / back and his achilles heel / plantar fascia. his rotator cuff was torn pretty badly at one point as well. other tendons and ligaments too, but they are the worst ones. and when we compare notes, he and i are very similar with the arthritis but thankfully i have no evidence of IBD.

so, i think if you take the meds that your doctor recommends, you may find that both your crohns and your arthritis symptoms improve.

and he's never had any evidence of fusion, just the tendon and ligament inflammation and pulls and tears like i get. its one reason i've been suspecting a spondyloarthropathy: since he has an obvious one and our arthritis symptoms seem so similar. its odd after all these years to be comparing notes on rotator cuff injuries and achilles heel pain and such.

sue

Realize that AS, diagnosed or not, can run any possible path- from mild to severe.... my mom was never diagnosed, but has many of the pains you describe... it has never been a problem for her- just a nuisance... at 65, I think she is out of the "danger zone". My older brother also has some of the signs, but again, never a problem, per say. Your doctor very likely might have "diagnosed" either of them, but this would not affect the mild course of their disease. For me, it seems to be manifesting as a much bigger problem... and is taking a lot out of me... maybe you will be like my mother, so do not anticipate pain more pain- just deal with it if it arises. I'm still saying little (BIG!!!!) prayers for my immune system to settle down....
Take care,
Stacey

WELCOME, Lindsay81:

AS and Crohn's might have an identical cause, but certainly my experience with Crohn's is limited to a close friend who had it, and her symptoms mirrored my own, but sadly predated them. Despite the warnings about smoking, she could not break this habit, so suffered much pain and indignities due to this disease.

Certainly, one can name 200 different diseases associated with AS. Now you just have Crohn's (which to me is scarier than AS), plus AS symptoms--which are very common in Crohn's. Whatever name you give to your condition(s) there is one mechanism and one cause. We will be publishing some research on Crohn's and its connection with AS soon, but if you are interested I will send to You advance copy.

HEALTH,
John

Wow, thanks for all the info. That's interesting to know that it can be diagnosed so quickly. I don't feel the need for a second opinion just yet... the rheumatologist that I saw made me feel very comfortable and was open to me asking questions and discussing things with me... I was just kinda in shock because I was expecting her to tell me I was fine and not to worry about it - I thought of a whole bunch of questions when I got home so I've written them all all down for next time. As for the knee and ankle pain... I don't think it's specifically the patellar or achillies tendon, they just get swollen and sore.

I had a pity party for about a week, but now am just trying to remind myself that it's okay, even though she gave it a name, I am essentially the same as I was 2 weeks ago. I suppose having a name for it makes it easier to make some positive changes that may help in the long run too. I am not against trying the biologics... in fact it would probably help me get of the steriods that I have been on for my crohns. I have been on remicade before and had some very good success with it, unfortunately after a few infusions I developed an allergy to it. I've also been on methotrexate for the crohns but only lasted for about 6 months because the side effects were so terrible. Interestingly the back pain started about a month after I stopped the methotrexate.

I am certainly hoping that it stays relatively mild like some of you have described! The diagnosis part of it is just very overwhelming and scary...

Thanks Dragonslayer. Yes, I would be very interested in seeing your research on crohns and its connection to AS.