Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Where to turn next?

I think this might be a long one...feel free to ignore or maybe make yourself comfortable :-)

Hi everyone, I stumbled across this website a few weeks ago and have been reading the message boards since. I finally plucked up the courage to join yesterday after a set back in my diagnosis made me frustrated that I had no-one to talk to about how I feel.

I'm a 30yr old female who has been having the most appalling year of my life so far (and I've had a few!). Since the beginning of the year I've had the most awful 'bone' pain around my SI joint, hips, and pelvis. This pain would wake me in the middle of the night and I'd have to get up and stretch or move to ease it. Coupled with ridiculous levels of anaemia and fatigue I've been in constant pain and haven't really been living any kind of life.

Initial thoughts from the GP were cancer (I disagreed entirely and was proved correct = no cancer), 'just' back pain, 'just' anaemia, and finally AS. When I read up on AS everything clicked into place and I really believe this fits. Looking back I've been having pain build up for the past 6 years but have put it down to other things until the point where I couldn't ignore it anymore.

A Rheumy gave me an initial dx of AS until results came back and this is what has upset me. I'm HLA-B27 neg, Rheumatoid Factor neg. Xray was clear and MRI showed only wear and tear. The rheumy has said he doesn't need to see me again but I disagree.

Is there anyone else here who had a similar initial response but who pursued the case and was later confirmed with AS?

I just have a gut feeling that this it and within the last couple of months my whole back/neck/ribs are hurting and it's really getting me down.

I have an incredible support network, a husband who is currently doing everything for me and very loving parents and friends but I'm about to lose my job because I can't physically do it any more and I don't know which way to turn.

I need to go back to the GP but don't know what to push for.

I hope I haven't bored you to sleep!

Thanks,

Kati x

I have very similar symptoms. One thing you should consider having done is a lyme test. But be prepared there is alotof controversy between general practitioners and lyme literate physicians. Many people are told they arenegative bytheir GP's when they are in fact positive. You can learn more here http://www.ilads.org/lyme_disease/about_lyme.html some of the symptoms you describe are symptoms of lyme as well.

You still could have AS. My mri was negative but a ct scan of the pelvis showed issues with the SI joints. I was HLA negative as well.

Hi Kati,

Sorry to hear about all that you are dealing with, it's overwhelming to say the least, isn't it?

It does sound like you are in the right place here at KickAs, your symptoms sound so familiar to me (I'm sure others here will share their opinions and views as well on their signs and symptoms).

I'd say the best thing you can do for yourself is to read up on 'things', educate yourself about inflammatory disease and what you can do yourself to tackle the 'problem'.

I have no imaging to help them prove it's AS in my case (I did test B27 positive, but I'm also Scandinavian, with northern indigenous blood, so fit the old B27 mold to a T!). I've never had Iritis for instance, but had persitent and increasing IBS for years, lots of bad colds, chest infections, then SI pain, then full blown spinal and major joint-enthesitis.

If you're open to diet and 'lifestyle' changes, that's the area I would research (I sure did!), lots of good info out there if you google no-starch diet / Paleo diet /Autoimmune protocol diet and autoimmune disease.

The interweb has been an amazing tool for me, this site in particular, since it's so important to remind yourself that all these crazy symptoms are not just 'in your head', that so many other people have these inflammatory problems, and they can be improved upon, no matter what kind of ill-informed doctor/specialist may cross you path.

Keep reading and asking questions, it's well worth it...

/Kristine

Wow, you guys are exactly why I posted!

You have no idea of the relief I feel just hearing from supportive people who aren't dismissive! Thank you so much!

I'll definitely look into the Lyme test, I'm very much a researcher so am following up all avenues :-)

Unfortunately for other reasons I can't change my diet much but I am looking into doing an apple detox and have been doing some stretches that make a big difference. I've also thought of hydrotherapy but I can't really do that when I don't have the energy to even manage the stairs! It's on my short-term goals list, though.

I think I'm going to approach the doctor and discuss the high false-negative rate of the HLA test and mention that my Aunt had AS. I'm also going to ask for a pain clinic referral and local physio.

You've really cheered me up, thank you xx

If your AS is just starting NSAIDs at an anti-inflammatory dose should work well. You probably wouldn't want the more powerful stuff till NSAIDs don't work anymore.

Oh and you need to exercise with the nsaids to see if they are working or not I recommend 30 minutes biking/elliptical or running. You could walk too... takes me an hour to = 30 minutes on those other modalities.

I'm not sure how normal it is for x-rays and MRI's to show wear and tear on a 30 year old. I would think that indicates inflammation consistent with AS, but I'm not a doctor. Still, I wouldn't trust a rheumy who puts too much stock in the HLA-B27 test. I am negative and my rheumy looked my right in the eyes and told me that I was a slam dunk AS case. It probably helps that her husband has AS, so she has more than your average familiarity with the disease.

There's no excuse, in my opinion, of a doctor being dismissive of your symptoms based on some normal blood work and inconclusive scans. AS and other similar disease may be active for years before they show up in scans, tests, etc. Hang in there and find a doctor who will work hard to figure it out.

Hi Kati, welcome. Next time you go to the doc, see if you can fill out this form beforehand. It can help with keeping everything on track.

Doctor's Visit fill out form

Hello Kati,

Not much help for now, can you detail some more of your symptoms... it is not uncommon to be HLA B27 negative and still have AS.

Hoping you find answers.

Tim

Yes, similar difficulties and I'm in the UK too (though I am a bit older than you). They do seem far more likely here to dismiss you if there is no absolute evidence for AS on imaging, when really they should be either considering an undiff spondy diagnosis, or looking a bit harder. You can ask for a second opinion, and I'd definitely do this - also strongly requesting that your imaging is reviewed by a musculoskeletal specialist radiologist. Make sure you get sent to an Ankylosing Spondlyitis clinic though (even if you have to travel further to it), not a general rheumatologist. You never know - what was seen as "wear and tear" could actually be inflammation, but have been misread. Just a thought - you need to find out if they did STIR sequences with that MRI. If not, then it would be useless to see inflammation. If they didn't do dye contrast as well, (injected dye, with images taken before and after) then you could ask the second rheumatologist if they would do that. You can do some research yourself (check out the ASAS/EULAR recommendations for AS diagnosis and testing) but I think you should be able to find something that would suggest that there are things that dye studies pick up that even STIR MRI sequences don't.

Consider joining NASS as well - its the UK National Ankylosing Spondylitis society, and has a wealth of information. If you don't join, there is still a lot on their website, including downloadable exercise booklets. Exercising is one of the most important things you can do regularly. They also have a helpline that you can phone or email, and were a lot of help to me in trying to sort out the whole diagnosis and treatment thing.

At the GP, ask about treatment with full doses of NSAIDs - thats the first line treatment that a rheumatologist would give anyway, so you might as well try it. Doesn't really matter which one you start with. If it doesn't work well enough, or if it upsets your gut, then take them with stomach protectors, or try a different one. There are loads and they are all slightly different. Some of us have gone through half a dozen of them over the years. Also ask your GP to refer you for physio, but see if they will put "inflammatory back pain" on the referral slip to make sure you get someone who understands AS. The other option that GPs have on offer is steroids - either as a short course (a couple of weeks at around 25 to 20 mg a day) to knock a flare, or as an IM injection to give you a bit longer relief until NSAIDs kick in. Steroids aren't a long term solution (too many side effects) and don't cure anything, but can be great to give you a breather from pain. If either steroids or NSAIDs work quickly (and pain returns when you stop them) that is another good indicator that you are dealing with inflammatory pain, not mechanical pain.

Good luck

Sounds like my history all over again. I'm 32 and have been going through this for the last 12 years. However, my GP thought it was AS off the bat, since my dad had it and it can follow a genetic pattern. I had x-rays, blood work up, etc. I had a positive rhemitiod factor, and Positive B27. However I went to the Rheummy he looked at me and said you are young. You don't have AS. Come back when you can't walk anymore. Literally, without even checking my chart! After looking at it, he still said the same thing and said not to bother coming again! So much for that help.

So I came home and luckily have a good relationship with my G.P. He's been helping me along the way. I also see a Natrapath which has been amazingly helpful. I see a physio as well - for other things but they are always willing to give me extra exercises and a hot pool when the A.S. gets out of control!

Good luck. PM me if you have any questions or need to vent! You should also join the ladies group here:)

Samantha