Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group So I decided enough was enough and went to the GP

My last visit, my doc did a Shobers test on me. He doesn't tell me what he is doing half the time. I found out what he was doing by reading, and studying. I don't know what the results were.

I would introduce your family to this KA website, let them read some stories. and they will begin to understand how deep this disease runs. And why other parts of your body are affected and how bad it can get. I have been realizing more and more how serious this disease is.

Re: those older family relatives with arthritis - do you have photos of them? Photos in my experience are really great ways to really show docs stuff. I've taken photos of rashes and stuff and they've actually looked at them seriously. Just don't take a whole album in - one or two of the most significant.

I understand the family concerns too. My mum always used to hate the thought that I was in pain, because I think she thought I'd inherited it from her. I was a bit reluctant then to open up too much. Chances are I've actually got this from my undiagnosed (and now passed on) dad though. Now I talk quite matter of fact about it all to mum, and she and I are much more able to share notes and commiserate without getting really down about it. I hope your mum and other family members get to that point - empathy and real understanding without overly worrying or panic too often.

I didnt mean to construe things the way I did, sorry. I can be so subjective when it come to disposition. The tape measure measurements really means nothing. I just wanted to show how important getting help is, especially early on.

The gist of what I meant is 15 years ago I was "normal". Then my trouble started and having gone on for all that time with no help AS has disfigured and crippled me. I was 5'11" 175lbs solid now Im 5'7" 158lbs mostly soft.

Its important that you use ALL avenues to get help and dont give up. When things in your body deteriorate there is no getting it back. You can be in agony for years with AS before anything shows up. I hope it doesnt take you the inability to breathe easily or the fact that you have no SI joints left on Xrays to get you help. By then its to late. Dont be discouraged by being jerked around. Only you know how you feel. There are far more wise people here about AS than I. Im sorry if I confused or mislead anyone. I did not mean to.

sorry for the frustration, i know how it can go, as i had a lot of frustration for years before finally finding the right rheumatologist. i think you have the right attitude of going to the specialists and not worrying so much about the GP, though still i know the frustration.

fibro: i was lucky that early on i went to PTs and a physiatrist that specialized in fibro and so they were able to rule that out from the start. but since it always came up with new doctors before it was ruled out, i read up on it and became as knowledgeable about it as i could. that and since i have all kinds of tendon issues, rare collagen disease (EDS) also always comes up and gets ruled out, so i've read up on those as well.

good thing, because the first rheumy i was sent to here in town quickly dx'ed me with fibro and EDS (through a few seconds of very aggressively squeezing my entheses which of course hurt) and when i explained why those had been ruled out over and over again, he wouldn't listen, through me back to the GP and then it took another 15 months before i could even find another rheumy who'd look at me. hoping your fibro label doesn't stick like mine did for as long as it did. all those years, all those doctors of ruling it out, there was no record of that.

becoming knowledgeable on fibro and EDS (if you have tendon issues) is important so you can talk knowledgeably about why you don't think you have those.

blood work: ESR and CRP are often not elevated for spondys, even when flaring, even when inflamed. i read that its because the entheses where the majority of the inflammation is are avascular structures; don't know if that is correct, but its what i've read. also, many of us flare, and so would only have the high inflammation at that time, thus another reason for ESR and CRP to be low much of the time. i never go for blood work when i'm flaring at my worst, as i can barely make it from the bed to the bathroom on those days, let alone leaving the house. thus, in between flares, my ESR Nd CRP are usually borderline "normal". but when i finally saw a good rheumy, he's the one that told me all of this, made sense. if they are elevated, that's helpful for a dx, but if they are not, inflammatory arthritis shouldn't be ruled out based on that.

ana and RF, if positive, helpful for lupus, RA, autoimmune, but if negative, doesn't rule out any of the spondys.

HLAB27: positive for 90-95% of AS but positive for only ~25% of undiff spondy. and undiff spondy still part of the spondy family, still similar and in many cases same treatments. but still if its negative doctors will take that as evidence of no spondy as rheumy #2 did.

rheumy #3 admitted that with my tendon problems that i had "enthesopathy" but when a CT scan of my SI came back showing osteophytes and "arthritic changes", he tried to convince me it was osteoarthritis. but based on all my other symptoms, that just didn't make sense to me.

do you have GI problems? if so, that's helpful in the dx of spondys.

do you have skin problems? rashes can also help nail down spondys.

dry eyes? or eye inflammation? again, eye inflammation goes with the spondys. dry eyes can point to inflammatory disease.

and family history: mine is like yours. everyone on my mom's side has had "arthritis" (newer term) / "rheumatism" (older term) and lots of inflamed stomach issues (gastritis, ulcers, stomach cancer, even without the nsaids) which i now know is part of our inflammatory disease. but everyone was always told to go home and take a few nsaids and so they did, til their stomachs couldn't deal. but now i realize its best to just tell them that my family all have inflammatory arthritis with GI inflammation. and the photos of family members, a wonderful idea given above.

as for touching one's toes: when my SI is flared, i can't touch my knees. but when not flared, my flexibility (after a morning shower of course) is the same as its ever been. nothing to cheer about, but nothing really "abnormal" either. the rheumy that dx'ed me understood that as well.

thus, i think finding a rheumy knowledgeable in the spondys is your best step.

but hoping the next doctor you are scheduled to see is also knowledgeable. prior to rheumy #4, almost from the beginning, my PTs, physiatrists, orthos, endocrinologist, chiro, all knew i had an inflammatory arthritis attacking my tendons and ligaments, and were all very frustrated that i couldn't find a rheumy who could see what they could see. they were my cheerleaders who kept encouraging me to keep searching for a rheumy who would dx and treat me for the inflammation. in the meantime they did everything else they could to treat the symptoms. and those things were very helpful as well. i think the fact that many of them saw me often got more data points and so could see what the rheumies couldn't observe if i went when i wasn't flaring.

in the meantime, keep doing what you are doing to keep the inflammation as low as possible, IMHO.

Thanks. And yes dry eyes and digestive issues. Though I am unsure about the benefit of mentioning the digestive stuff since IBS + fibro would be classic in their minds.

I also had a dx of reactive arthritis in 1996 soon after my SI symptoms started (I thought the SI stuff was due to pregnancy so never saw the doc about it). I had a livid rash all over my legs and then flared up with painful swollen joints, especially my hands. That got better after a few weeks but still could have been some kind of initial flare of inflammatory arthritis I would think.

I don't have standard typical AS symptoms so maybe it is undiff and the gene test would come back neg. Diagnosis is frustrating- it's like with gluten, if you don't have classic advanced celiac you get told you're fine.

But I also very much don't have standard fibro symptoms either. I don't have muscle issues at all except when my neck and shoulders are very bad, the muscles there tend to tighten up. But that's all.

That reactive arthritis diagnosis is important - make sure you mention that. ReA can turn into AS, or it could have been misdiagnosed AS in the first place. Whatever, it shows you already have had a spondyloarthritis diagnosed and that should get you somewhere. At the same time you talk about the ReA make sure you also add in that you had had the SI pain before that, but didn't see any docs about it.

IBS - yes, can very easily be written off with that, especially in the NHS and especially in combination with a suggested diagnosis of fibro. One way you could introduce it is by saying "I have GI symptoms of.... but haven't had any kind of testing or investigation for that so far, so I don't know if its just IBS or something else". They actually shouldn't diagnose IBS until they have done some testing to rule out IBD.

Thaks, I have made a note to make sure I mention the arthritis in 1996 (was a few months after the SI pain started and around the same time the IBS symptoms began.

I lay in bed earlier and worked on tracing where my pain is (as I'm in a mild version of the "sore all over" phase). My muscles are the bits that don't hurt. Joints and all around the joints radiating from them, and places where there are tendons etc. The places where the big, obvious muscles are are the bits that aren't sore.

I'm making a list of things to make sure I mention. Hopefully he will do a proper timeline history so I can describe the SI discomfort followed by gut symptoms and reactive arthritis diagnosis in 1996, dry eyes starting in 2002. Focus on how pain is centred on the joints, ribs hurting when I breathe, morning stiffness, plantar fasciitis since Dec 2010, joints that click, pop or make crunching sounds. When bad it is the joints as mentioned but amped up so it feels like my bones are throbbing and aching. Muscles are still fine then too, except the neck tension which usually follows the shoulder and neck joint pain being bad for a day or two.

Maybe it is not AS but I am convinced it is some kind of autoimmune arthritis type condition. Certainly, when I read here I think "that's just like me!" and when I read fibro posts I think "Oh that must be awful".

This perfectly describes my shoulder pain: "An inflamed nerve in the neck often triggers a pain that seems to come from the shoulder but doesn't really. The brain gets confused by the incoming pain signal and blames the shoulder, or the hand or both when the problem really lies in the neck itself or in the nerves that arise in the neck. This kind of pain is often accompanied by a sense of tingling or pins and needles in the hand." Hmm, what could possibly being going on in my neck that is impinging upon a nerve I wonder.... lol. One of the question marks in my mind has been that my shoulders, arms and hands hurt more than my back. But according to what I have been reading, the kind of shoulder, arm and hand symptoms I have is usually caused by a problem in the neck. Makes sense. So the whole "aching throbbing arms" thing I get when I am bad is actually coming from my neck. A friend of mine just messaged me saying her mum has AS and describes her pain in exactly this way. Hah, I feel better again now. I bloomin well do have AS and I can get back to feeling hopeful about the NSD instead of thinking I may have fibro instead.

I think fibro is the go to dx for most of them. Molly even just posted an article about how most of them can't even properly read our x-rays. Maybe that's why fibro is often the chosen culprit.

I also wonder about when NSD, exercise, and our other proactive efforts, have a positive impact on our test results. Do the doctors then go, "Ah well you don't have AS!" Like they would rather call it fibro than to be wrong, but rather be wrong than to give any credit to NSD. I've decided NSD is helping me, and damn what any doctor thinks about that. I'm not willing to undo my short progress for the piece of paper that names my ailment. I just want to feel better and squeeze life for all I can wring from it.

Hello, I'm sorry to hear of your pain and difficulty with diagnosis. Thankfully, your GP took you seriously enough that she is referring you to a specialist; albeit, not a rheumatologist.

Just so you know, I have a firm diagnosis of AS. I, too, can touch the floor when I bend over. When I was diagnosed, I could bend from the waist, knees straight, and put my hands flat on the floor. A lifetime of dance training and stretching contributed to that. The problem is that women do not always present AS the same way as men. Dr. Mohammend Khan, of Case University, acknowledged this in an address to the British Columbia Spondylitis Association in September 2007. And damage visible on x-ray is no longer considered, in international circles, the be all and end all of diagnosis. Women often are in their late 30s before that happens.

Go to the specialist with a list of questions - put a star beside the 3 most important to you - and give the entire list to the doctor to ensure something medically important isn't missed. Make a list of symptoms, do a pain chart, and go in with an open mind. Let the doctor diagnose you without your opinion on the matter. Doctors hate when we go in and tell them what we have without having received a firm diagnosis first.

Persevere. You will get the answers you need. Too many of us here have been in the same position.

Hugs,

Thanks. And yeah, 18mo of iyengar yoga, I couldn't touch my toes before that. I tried this morning first thing, could get to about a foot from my toes. If I was "starched up" I can barely bend forward at all because my neck would hurt too much. I got the impression she assumed I would have fusions in my spine if I'd had AS for 16 yrs, I guess that's what basic GP knowledge would teach her to expect.

I am coping better today. Reminding myself that whatever this disease I have is, it already is what it is, and whether the diet will work, that's already decided too. Nothing the doctor says, and no diagnosis, correct or incorrect, will change my life in that way. That helps. Still praying for a positive ESR or CRP though lol.