Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group AS and FM four years on...

In some ways, I'd almost rather than had no diagnosis than FM - once the FM label had been attached to me, everything's been put down to that - it's almost like the doctors see it coming.

I have mentioned the HLA-B27 test on a number of occasions, but it's not something anyone's been willing to do, purely on the basis they feel there isn't sufficient other evidence to make it worthwhile (which is partly what made me wonder whether it's very expensive for the NHS to do?!)

I've had a lot of other bloods done (well, they've been done twice in the last couple of years), including the ANA, ESR, CRP etc. but all have been within normal range.

Yes, I've had IBS-type symptoms all the way along, but they tell me these are stress and/or anxiety-related (interestingly, as I said to someone the other day, I was neither stressed or anxious until I became ill to it's not as if one proceeded the other).

That's hogwash. Thankfully I always had outstanding GI docs. They told me that doctors used to think ulcers and IBS were stress related but discovered that they are not. Yes, stress can exacerbate things, but its not the cause. The inflammatory process is the cause.

Get a GI doc to do a colonoscopy up into the end of your small intestine, the ileum. Inflammation and / or small crohn's like ulcers there are a hallmark of the spondyloarthropathies, even if someone is devoid of IBS symptoms (that's what I read in a rheumatology text).

If the earlier rheumatologists had asked me about my GI symptoms or if my GP were smart enough to relieve that my severe GI symptoms and severe arthritis symptoms were related, we could have saved ourselves about a dozen years.

Not only are they connected, but my doctors believe the one (GI problems) triggered the other (arthritis).

For me, they flare together, and even more importantly, prednisone and Humira make both much much better.

If you can't find a rheumy who will put the two together, see if you can find a GI doc who can.

Or, if you get even a little bit of psoriasis, a dermatologist may be able to put it all together. What I thought all those years was just weird dry skin patches, as I could usual heal them up with Eucerin, turned out to be psoriasis. Who knew? The dermatologist, that's who. I was seeing him for something else. While there, I asked him about my elbow; it was healed, so he couldn't see it, but when I described that it was like I had fallen and skinned it on concrete (scabby and bleeding) but I hadn't, then described other patches and showed him some old photos, then told him about my GI problems and my arthritis problems, he wanted to know why I wasn't on Humira. Turns out he probably could have dx'ed me sooner than the rheumies did if I had seen him sooner.

I am HLA-B27 negative. A positive result can be helpful. A negative result doesn't mean a thing.

I'm ANA neg, RF neg. That's why the spondy's are called seronegative. Nothing shows up in the blood work.

And the ESR and CRP, if elevated, can be helpful in a dx and treatment. But too, its very common for those with spondys to not have very elevated numbers. Mine were always on the high side of normal, but normal none the less. I read that since the entheses, where the inflammation is, are avascular structures, inflammation doesn't show up in the blood stream. Also, since I flare and then am a bit better in between, the ESR and CRP would only be high when I was flaring, but I don't go get blood work done during those times. If I had known better back when trying to get a dx, I would have, but no doctor ever suggested that to me.

I didn't realize for the longest time I was flaring because I thought to flare, one also had to go into remission, and I've never done that. All flaring means is that at times we're infinitely worse than at other times, but then in between we have inflammation, just not as dramatic. So instead of going from 0 to 100 and back to 0, its more like going from 25 or 50 to 100 and back down to 25 or 50.

Though many doctors would like to dx us with blood work or radiology imaging, a good doctor can rely on symptoms for a dx. Symptoms and what works. If a drug that works on inflammation helps, it ain't fibro, for example.

I know exactly what you are saying.

I was lucky that for the first 9 years, I had good orthopedists, PTs, and physiatrists that told me why they knew I didn't have fibro.

Then a rheumy dx'ed me with fibro and I couldn't get that out of my charts until I spent $1500 and flew down to Philadelphia and got a proper dx by Dr Brent at Einstein. I asked him to write in his letter that there was no evidence of fibromyalgia. Then my new GP made sure that the fibro was stricken from the record. I didn't even know they could do that.

One symptom (enthesitis or tender points? feels somewhat similar) does not a disease make. But if you have lots of symptoms that point to one thing, then it all adds up. For me thats:

•GI inflammation
•Joint inflammation including spinal inflammation (SI, lower lumber, and neck)
•Enthesitis
•Psoriasis
•Dry Eyes
•Mouth Sores
•Fatigue when I flare
•Skin rash when I flare badly
•Sitting can be a nightmare
•Sleeping, laying can be a challenge
•Being immobile is worse than being mobile
•Morning stiffness (though that's never been my worst symptom, and now that I'm on Humira and my hands are still stiff when I wake, I think its more OA)
•Aleve works somewhat but gives side effects
•Methylprednisone is amazing (but due to side effects is not a good choice)
•Humira has been really helpful (but of course to get to a biologic, one must be dx'ed first)

Hi cadenza,

I get the impression that it's particularly difficult to get a diagnosis of spondyloarthropathy in the UK if you don't present with inflammatory markers in your blood.

As my liver doctor said to me "We doctors are very good at dealing with evidence presented through bloods, but very bad at treating symptoms."

Yes, that sounds about right. I mean, I accept these things aren't easy to diagnose, but from what I've read and experienced, FM is the easy option - once you've got that label, that's it - everything you present with is attributed to that.

Interestingly, this is another of the things I've mentioned as I now get a scaly, dry rash on my elbows periodically - again, never had it until four years ago. But again, lots of people have looked at it and said "it's just dry skin"...