Axial Spa / Ankylosing Spondy diagnosis - Pain Concern

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Axial Spa / Ankylosing Spondy diagnosis

Sambino78 profile image
Sambino78

Hi all, I am 43 years old, have had all the major symptoms of AS since my mid 20s and flares have ramped up over the years. I do not have a diagnosis. When I last saw the rheumatologist 6 years ago I had no inflammation in sacriollic joint etc so told just wear and tear. This despite the same guy hitting me up with a cortisone injection in my shoulder due to inflamed tendons. Since then I have had a bad bout of uveitus, psoriasis outbreaks on my face and night back pain has ramped up a few more notches in the last year forcing me out of bed at 4am. Sometimes the amyltryptaline will see me through until six. Other symptoms include knee pain, shoulder pain, Achilles pain, neck and thoracic spine pain and stiffness, fatigue. All of these come and go to differing degrees except the back pain. I only really came across AS 7 months ago when I did more of a deep dive into night back pain. It was like a lightbulb moment. Unfortunately my GP has been blocking a further rhuematology referral saying wear n tear, wear n tear not taking into consideration any of the other symptoms listed. So I have in the last 2 weeks paid private for MRI scans and HLA B27 genetic marker test. The sacriollic joint MRI has returned with no inflammation again but the HLA B27 is positive. I have 2 questions for you guys. I am seeing a rhuemy again next Monday armed with all this new info. 1) has anyone here had an AS diagnosis based on just their symptoms and pos HLA B27 but no inflammation in bloods and scans? 2) has anyone has a dual diagnosis for AS and Fibromyalgia? Thank you and apologies for the long post. This site is excellent btw and already helped me through some hard times.

10 Replies

I am having similar problems with rheumatology at the moment. Because things flare and then calm down, they never seem to be able to believe there is a problem. My blood inflammation markers have been negative but they haven't let me have the HLA B27 test yet, however one of my physios has asked me to ask them for it.

I don't know what the solution is. But i do know that they are kidding themselves when they say they provide patient centred care!

They don't seem to remember that a proportion of people have negative blood tests for inflammation and the same with HLA B 27. They just think that if most people have positive bloods then everyone should and it would be rare for them not to be positive. And yet, there are 1000s of people who don't test positive but have active disease.

Sorry, no solutions for you, just letting you know you are not alone is struggling to get an appropriate diagnosis.

Sambino78 profile image
Sambino78 in reply to cyberbarn

Cheers cyberbarn. NAAS, national association for AS say 30% of people won't have any inflammation in bloods or MRI. 90% of white europeans who have AS have the HLA B27 marker. I ended up paying for my B27 test private, about £115 and glad I have now as I think it further strengthens my case. GP refused to request it saying it isn't something they would request without rheumatologist yet also won't refer me to them because 'it was only 6 years ago you last went' no consideration for how much further I have deteriorated in them 6 years. Just take these pills and go away is the feeling your left with. I have also changed gp practice recently. Will let you know the outcome of my rhuematology appt (also privately paid for) after Monday. If I get a diagnosis it might inspire you to follow my lead and do your own investigations. A GP has 15 minutes to listen to you. It has taken me hours and hours of reading and considering all my symptoms closely to understand that I may have this condition. Maybe it will all come to nothing but at least I know I have taken control of the situation and not just be fobbed off time and again. I hope you are able to get some answers sir.

Batty1 profile image
Batty1 in reply to cyberbarn

If the HLA B 27 shows negative it doesn’t mean you don’t have PSA this was another reason my diagnosis took 2 years I was negative on test but I had moderate to severe psoriasis for 47 years Im 51.

Well your GP is a medical monster and has no idea about psoriatic arthritis and should be told to stay in his/her lane and let the rheumatologist determine if you have psoriatic arthritis.

Understand that even the best Rheumatologist can misdiagnose PSA since most people take about 2 years to get a proper diagnosis sadly I know this all to well it took me 2 years and 3 rheumatologist and numerous x-rays and blood test ..... x-rays will only show bone involvement NOT tendon involvement (I have tendon) which is a monster even monthly Cosentyx injections don’t feed this pain monster.

Chase888 profile image
Chase888 in reply to Batty1

Agree and great answer. My GPs come and go but I have had some lovely GPs but the latest one I can't stand!!

Hope the OP gets to see a different doctor.

Hi Batty. Yes, I am not thinking along the lines of PSA to be honest, more non radiographic SpA, but you are right of course about The HLA B27 not being definitive. As I have no inflammation markers in my ESA blood tests or damage or inflammation on MRI I am rather reliant on the genetic marker and symptoms in getting a diagnosis. I was hoping to hear of others of successful diagnosis with these criteria but am fully aware that for many the path to diagnosis is long and arduous. Thanks for sharing your experience.

Batty1 profile image
Batty1 in reply to Sambino78

I was diagnosed without having a positive HLA-B27 test and inflammation markers.

I had to go to a rheumatologist that specializes in PSA in order to get properly diagnosed she did this based on previous x-rays and blood test and long history of having psoriasis and nail involvement.

I have to pay out of pocket to see this Rheumatologist.

Sambino78 profile image
Sambino78 in reply to Batty1

Do you know I had no idea that nails were involved. I've had both of my toe nails discolouring, lifting and coming off for 10 years or more and would never have linked it to all the other symptoms as potentially part of the same illness. Just looked it up and of course it's a symptom. Makes so much sense. The amount of times I have written all these things down and gone to the gp and they are like...well, there's too much here to deal with in one go. Let's just focus on one thing today. I'm like, but my whole body is under attack surely it's all linked. So frustrating.

Batty1 profile image
Batty1 in reply to Sambino78

If your nails are thick and lifting off the fingers and also if you hold your hands up to the light you should see pitting on the nails.

Even if you don’t have nail involvement the doctors can’t rule out psoriatic arthritis simply because you have psoriasis and the likely hood that you developed PSA are 30% and personally I think GPs are useless for psoriasis and in my opinion dangerous because every time they ignore your pains and skin is one more time the damage to your bones and tendons go unchecked which could eventually lead to permanent damage..... Im living proof of this!

As a side note people with psoriasis are also prone to thyroid disease .... Im definitely proof of this one too.

Pay out of pocket to see a Rheumatologist that specializes in PSA and while you wait collect all the recent bloods and X-rays within the past year... obviously they will still do their own but without your mounting proof that something is off it could take longer to get help.

PSA like Psoriasis has no cure just bandaids (biologics, pills) I purchased this probiotic a month ago just to see if it could help with my pains and seriously feel like its helpful (not a cure).

Probiotic

I said I would update how I got on with my consultation on Monday. Spondyloarthitis was the diagnosis, if she had to give a specific label she would say Psoriatic arthritis but really a mish mash. Also a bit of Fibromyalgia thrown in for good measure. To the guy whose physio suggested getting a HLA B27 test I would absolutely agree and you can get it done privately, just Google it. Cost me £115 And was straight forward. Result in 3 weeks. It was without doubt the key to my diagnosis, with just 2 or 3 other relevant symptoms let alone the 7 or 8 I have. Go for it.

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