Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Feeling a bit deflated!

Hello all!

I'm a newbie and thought I'd join the forum for some advice.. I've been having some back problems for a few years and have tried all manner of physio exercises, back in January I was at the GP for a kidney infection when I mentioned I get terrible stiffness in my back in the mornings and after long periods of sitting. The GP immediately flagged this up as possible AS and ordered the HLA-B27 test to be done, which came back positive. As anyone on here from the UK knows, the wait for bloods on the nhs can seem like a lifetime! The doctor went over the AS symptoms and I did some research online and realised it describes exactly how i feel!

Anyway, after my b27 came back positive and I mentioned my grandmother having AS, i was referred to the rheumatologist who took some more bloods, took some measurements and organised an MRI. At the time I brushed off the feeling that she didn't really ask any more about symptoms or anything like that - didnt really talk about it at all. Now, today, I have got a letter (not even a nice phone call!!) saying "your MRI was totally normal as were your blood tests. You might be a little hypermobile, I recommend the physio"

I just feel so deflated as I'm all the way back to square one and I really feel like they may have overlooked the fact that my symptoms really do match those of AS. The pain is really affecting my life and I really do struggle to cope sometimes. Has anybody else had a similar situation?

PS sorry about the long post!

I don't know if I've been in a similar situation. My path to diagnosis was about a year and a half. I thought it was ridiculously long until I started reading the stories of other AS patients.

Are they saying you don't have any fusion in your SI joints? A person has AS symptoms before any damage will show on an MRI/X-ray. I would definitely get a second opinion from someone who will listen to your symptoms and take in all factors for a diagnosis. Definitely, just because you got this letter, it does not mean you don't have AS. I've read too many stories of folks getting similar negative diagnoses, often due to the close mindedness of the doctors.

Anyway, I hope a solution presents itself for you soon. Sorry for the set back.

lilyachristine - NOT a long post at all....you should see mine...lol

Any way.....YES to your question but in a little different way. I was diagnosed through symptoms and a positive HLA-B27 20 something years ago but I can't tell you how many times I have been told I don't have it - mostly through sheer ignorance to the varying developments that are part of AS.

CAN you get a copy of the Radiologist report? I know the NHS is a touchy bird (I feel we are strongly headed the same direction in the U.S.). If you can get the report, go over it with a fine tooth comb and look up every word you don't understand.

IF the MRI was done properly, there should be a reading and if the Radiologist is doing his job right, he should be documenting the condition of each area covered on the MRI. That is a start. DON'T give up and keep reading. I have learned more here in a week then I knew in the last 20 years. No more pretending AS doesn't exist.

One other thing is, was the MRI done in the area of concern? I recently had one done to my Lumbar but it was the mid back giving me fits but they found issues in the lumbar too so it wasn't money thrown away.

I would definitely get your GP to refer you for a second opinion, but do some research first and find a rheumatologist who has a special interest in spondyloarthritis. When you do see them, make sure you get them to have a look themselves at the MRI (not just the report), and specifically ask for a musculoskeletal radiologist to review the films.

You could also ask your GP to do some more imaging - a plain film SI xray might show up old damage, that wasn't reported on the MRI, because they were only looking for active inflammation. Also if you have any areas of bad enthesitis (inflammation at the entheses, or the point where tendon joins bone), particularly achilles tendonitis, then ask GP to do an ultrasound scan to look for inflammation and enthesitis.

Have you tried taking NSAIDs? If you get definite positive results within 24-48 hours, and pain returns when you stop them, then thats a good sign of inflammatory back pain. A short course of oral steroids will also give a bit of an indication if its inflammatory as well, if you get a good result, though in both cases if you don't respond it doesn't mean you don't have AS.

It may not be AS, but with back pain AND a positive HLA B27, I don't think you should be brushed off so quickly. Keep on working with your GP to try and build up a bit more of a case for inflammatory back pain and spondyloarthritis, and definitely go for that second opinion at a specialist clinic.

Just noticed you are in Scotland. Which NHS region? If you are in the Glasgow area, Prof Ian McInnes (or McKinnon?) would possibly be a good bet from what I've read. Young guy, and doing a lot of cutting edge research. Don't know any spondy experts in Grampian, and not sure about Edinburgh or other areas.

Thanks guys for your suggestions and encouragement!

David - all I was told was that my MRI was "entirely normal as were your bloods - no signs of inflammation". Bit strange to me as my GP pointed out she could see the inflamation just from looking at my SI joints!

CentralGAGal - what a great idea, I'm definitely gonna get in touch with my GP and find out if she can get hold of the report so I can have a look at it. I'll probably be back here asking all sorts about it! As far as I know, it was upper back, lumbar, and SI but we again the rheumatologist didn't really tell me much.. I spent a lot of time looking through websites and forums to find it out for myself.

When I found out that the IBS i suffer with and the plantar fasciitis I have had in the past (as well as the severe hip pain) are all linked to AS I felt so certain I had finally found the cause that (sounds a bit silly) I really got my hopes up! Driving me crazy that I'm back to where I was before all this!

cemc - lucky for me I am in the glasgow area, so will definitely ask about seeing that specific dr. i should maybe look him up first and get his name right first though

I find ibuprofen does definitely help, especially with the stiffness, but I don't think my doc is keen on giving me anything stronger before a diagnosis.. I'll try pushing for it as I do see positive results.. just not strong enough ones. I generally take solpadol but maybe thats just to get me through the day at work ha ha

thanks for all your helpful suggestions!

Hello there and welcome to Kickas

From the few symptoms you mention, the bloodwork and family history I think unfortunately it is safe to say you have AS.

Unsure why the doctor cannot figure that out... may be looking at a 1970´s medical book. Currently you may not have MRI proof.. but it will come with continued inflamation/pain if untreated. Not everyone has elevated inflamation markers in blood either.

If cannot get treated properly for now... can look at Omega 3/Fish oil.. some have success with that, Ibuprofen for some temporary relief of modifying diet to see if helps.

I would continue working with the doctors and educating them on AS so you can get a proper diagnosis.

Best to you,

Tim

Good feedback....

I have to second what the others have said. It took over 10yrs for me to get a diagnosis even though I had a lot of spinal damage my SI's looked ok. I am HLA-B27 positive but even in my worst flare my "bloods" look normal. Not all of us are indicators as far as blood work goes and many doctors even rheumys don't get that.

Given your family history and positive HLA-B27 added to your symptoms I think it would be safe to say you do have AS sorry to say. Now the hard part is finding the right Rheumy. All the very best.

Little hint: after being on KA for a while you will soon learn that you will know more about AS then many of the "professionals" you will meet.

This continues to perplex me. Why is there so much ignorance in the medical field about a disease millions are suffering? I started out with a sport's doctor. Radiology report from x-rays noted an issue. He completed dismissed it, since I was too young to have arthritis. If I stayed with him, I only would have continued to injure myself through his physical therapy. I had a torn labral in my hip as well that he couldn't find.