Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group If not AS?

I wonder whether anyone here thought they had AS, but in the end it turned out to be something else? I wonder what other conditions could cause similar symptonms?

David

Keep looking for a different doctor. My symptoms were not textbook either. I guess women tend to present differently, but my major complaints were feet, hands, hips, knees, neck. But I had 2 rheumatologists agree it was AS. It took 9 doctors just to get referred to a rheumy though. I started to worry that these docs were thinking I was going crazy.

In the mean time have you considered trying an anti-candida diet, or the no starch diet. Candida can cause a ton of pain too. Just a thought.

Happy holidays.
-Donette

I just thought of something else to try, the doctoryourself.com website has some suggestions for arthritis. I am doing the high doses of niacin (b-3) and it definitely has helped my pain levels go down. It has also cured my hubby's restless leg syndrome. Interesting site. Their suggestion of high vit. C doses also seems to help me. Those are easy things to try.

Yes I keep battling on, but I suppose I'm wondering what else it might be if all else fails on the AS front. There's definitely a family history of autoimmune diseases. At the moment I'm suffering awful pain in my upper arms ankles (the ankle pain has replaced the heel pain I've had the last two weeks). I'm still awaiting an MRI (now scheduled for the 12th January, but I'm not holding my breath...) and possibly a second opinion. I wish there was something I could do in the meantime - at the moment, I'm just taking Ibuprofen when things are bad....!

David

at first i only knew about AS, that's how i found this site. then i started to learn about undifferentiated spondyloarthropathy and that's what i have. for me that seems to be inflammation at the entheses and everything that goes along with that, but no fusing. and since i've had symptoms for 12 years with still no evidence of fusing, that's probably an accurate statement; i'll be surprised if it ever changes. the big differences seem to be for AS vs undiff spondy: 90-95% HLAB27+ vs 20-25% HLAB27+; fusing vs no fusing; iritis / uveitis vs not. still a lot of the same symptoms where the inflammation is concerned though. plus since my enthesitis is so pronounced, it causes me to not only have a lot of tendonitises, but torn tendons and ligaments as well, at least that was my rheumy's explanation for that.

here's a good review of AS vs undiff spondy:

http://emedicine.medscape.com/article/332945-overview

as donette said, don't give up; sometimes we have to go to a lot of doctors along the way. even if its not AS, you're in pain and it should be taken seriously! huggs to you!

a few more things that have always been considered, then ruled out for me:

1. fibromyalgia. since tenderpoints are at the entheses as is enthesitis, it can be tricky to differentiate the two. but tenderpoints are not inflammation or so i read. plus fibro is sore sore muscles. and sore everywhere all at the same time. and fatigue. all kinds of things i don't have. plus i do have inflammation (-itises) and SI joint issues and spine issues, all kinds of things fibro patients don't have. but the overlap is the pain at the entheses, is it inflammatory or not?

2. "rare collagen disorder" (EDS) - but i am not hypermobile. even if some of my joints get loose when i flare, they are not always loose and its mostly my SI and ribs, not all the other joints like in someone with EDS, but EDS can cause similar symptoms (the joint pain, the muscle spasms, the tendon and ligament problems) but the symptom that rules it in or out is the hypermobility; every doctor tests me and i fail miserably, if anything i've been hypomobile my whole life, even as a kid. the tests are, can you bend your elbow or knees backwards significantly, can you bend your thumb back to touch your arm, things like that. as i said, i fail miserably, and so its always quickly ruled out.

3. myofascial pain syndrome. initially that's what they labeled me as having and i do in my upper left back where i tore my rhomboid, but then when it was also my SI, wrists and feet and knees and and and, they couldn't just keep calling it myofascial pain. and it was those doctors treating me for my upper back and SI that insisted i see a rheumatologist.

maybe if you found a good physiatrist, PT, chiro, orthopedist, maybe they'd see in you what they saw in me and insist you had something rheumatological as they did with me; that happened in early 2000s with the first physiatrist, but i stumped the first rheumy, so the physiatrist said, "that's ok, i can treat the symptoms." and since that was helpful, that's what i did, til the summer of 2006 when things got infinitely worse once again like they were in the first few years, then it took from then til this september (and 4 more rheumies) to finally get a dx of undiff spondy with a treatment plan; we're working on the treatment plan now.

I personally think the doctors rely too much on tests and not enough on how the person feels. One of my sisters has had advanced lupus and RA for 30 years, yet she is ANA- and RF-. Another sister is HLAB27+ with chronic sacrum and thoracic pain, yet her doc insists she has fibromyalgia with no AS. And I am ANA+, RF+, and HLAB27+ yet I am lucky enough to "only" have pain. All three of my sisters have had joint replacements and spontaneous & surgical fusing. It's weird. So where am I going with this? Oh yes, TEST RESULTS should only be a MEASURE! Two years ago when my last bad flare up started, after 38 years of just periodic "bad back" episodes, it took a year for the docs to do all of the tests because I appear so healthy. Again, not complaining. But then it was more like "no wonder you're in pain!" instead of "you don't seem to have anything wrong with you". It has been really frustrating for all of us, but I agree with everyone else. Find another doctor. And specifically describing how your life is affected to the doc really helps. For instance, two years ago I could ___, now it's like this ___.
Well, that's my take on the situation.

GI stuff:

celiac disease (allergy to gluten) can mimic arthritis. while it often causes GI distress, not always. and its very easy to have tested. since i do have gastritis, while the doctor was down there doing an upper endoscopy, he also biopsied the beginning of my small intestine: no celiac. but to be even more confident, blood work: antibodies and genetic markers. while they won't do an upper endoscopy unless you have stomach issues, the blood tests are simple. i tested negative every test that was done. that's one of the first things they like to rule out when evaluating me for arthritis.

IBS and IBD are common in anyone with a spondyloarthropathy. and one can even have inflammation and/or small "crohns-like ulcers" in the illeum (end of small intestine) even without IBS symptoms. so if you're due for a colonoscopy, ask them to do it all the way up into the illeum. not that this dx's AS or even undiff spondy. but it is another piece of evidence. my inflammation and small ulcerations in my illeum done this summer has been useful in my dx this fall. but i do have both gastritis and IBS (thankfully doesn't appear to be IBD though the rheumy thinks i should have testing done when in a GI flare to make sure). so all my GI stuff along with the arthritis symptoms does add up. but still you can have the illeum inflammation and not have GI symptoms if you really do have a spondy. the other thing that causes that though is nsaid use, so if you are using them, then this piece of data can't be used, but i hadn't had any nsaids for over a year, and then it was just a few for a few days, so the GI doc said it wasn't from nsaid use for me.

Good question David. I've ended up here after going through neuro investigations (muscle spasms, stiffness, gait disturbance), and lupus investigations(have had a malar rash for years). It wasn't until my cousin said he had AS that I suddenly realised I had had back pain for years - since my teens, and everything fitted. Also that my father and brother are the same. At the moment my doc is saying fibromyalgia (but like Sue, it clearly doesn't fit) or chronic pain syndrome, or just arthritis or normal degeneration. I don't have the benefit of raised inflammatory markers so she won't buy that its inflammatory. In a young male it could be scheuermanns (if its mostly thoracic spine) or an injury that you weren't particularly aware of, but if it looks like a duck.....

I really can't see that it can be anything other than one of the spondy disorders for me. I knew it wasn't neuro, and I was never convinced about the lupus possibility either, but spondy fits like a glove.