It Took 7 Years to Get a Diagnosis

By Facing Spodyloarthritis

2 min read

Diagnosis: hello there. I'm still flaring. Started on the 10th of July. 10 days after my third Pfizer vaccine. I am having horrible gut pains which I don't remember having before. Been to the GI, rheumatologist three times, list 3 kg but I can't give up as I'm the mother of two. I like reading you all so that I know I'm not alone and I feel some support even if I don't know anyone in person with the condition.

I want to say that I do remember 12 years ago feeling a tiny pain in the middle of my spine where the bras goes...in the UK they only sent me to the back clinic and did some physiotherapy. It kind of went away but not completely. 4 years after I remember having this weird feeling in my eyes, went to the eye doctor and she said it was my eyelashes growing inwards, my eyes felt extremely tired and sensitive to light they will suddenly start producing tears after extreme burning pain, ever since I wear sunglasses daily (it was uveitis for God sake) 6 years after I had extreme vertigo for two weeks and was just not feeling myself but they said I had stiffness in my cervical spine and sent me physical therapy.

Finally to the year after I had this on to ongoing pains under my underarms (towards the ribs) started onnthe left and it slowly moved to the spine (toraccic) and then the right, then shoulder blades so I finally had blood work done (RA ANAS, ENAS AND SO ON) all negative but MRI showed inflammation in SI joint which is worse now 6 yes after diagnosis. As mine is zeronegative my doctor only gives me NSAIDS courses and heel homeopathy.

So I actually put up with pain (sometimes really bad) but I have no hope he will put me on biologics or even prednisolone. My hips are soooo wornnout but they don't hurt so doc does not understand how it can be ... I think that I keep a very light body weight (45-46 kg) to 1,56 m height and since I was diagnosed I've never stopped swimming not even in the worst of flares.

I think it's important to share this as many of us feel symptoms but doctors often dismiss any sort of spine or back symptoms. I wish you days free of pain (many and often) and i hear you always.💫❤️

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bobinflorida Member
In 1922, I began feeling the beginning of AS, although none of my doctors diagnosed it as such. Back in 1962 they didn't know what AS was. It was 1999 before a Ruematologist ran some tests and confirmed I had AS. That's a lot of years in pain being treated for everything other than what I had. It has been a long, hard run with little relief over the years.
Beverley Member
I agree with everything you say. My symptoms started in my twenties and I finally got diagnosed this year aged 64! I don't have the gene, I am female and so I was fobbed off for decades. MRI scan shows spinal compression, entheses, bone fusion, bulging and damaged discs etc and I have chronic tendinitis in both wrists and ankles. Need two new hips and a knee. As I have had two heart attacks in my fifties I cannot go on NSAID's so now waiting for my delivery of Enbrel biologic therapy. The system failed terribly and I can't help but be angry. I had to fight my case every step of the way. I wish you good luck and keep bugging them until you are satisfied.
Kellyd Member
It has taken about me 35 years for me to be diagnosed with AS. I started getting really bad stomach pain. I went to a GI and did every test they could think of. Still no answer. They said it was Fibromyalgia. Okay hen it got so I couldn’t walk at 50 years. I had so much pain. Finally a rheumatologist told be it was Fibromyalgia. He didn’t know yet what it was but he was going to find out. I love that doctor! He did a battery of test and was able to diagnose me. That was eight years ago. My stomach still hurts at times. Don’t know why, my leg pain has come back it’s hard to walk at times. I found that women have significantly mor symptoms than men and the doctors don’t know about them. My pain is in my fascia, I get pain in my collarbone and it goes up my neck for no apparent reason.
Facing Spodyloarthritis Member
Hello <inline-mention username="James Hollens" user-id="2386640"/> thanks for your reply. I'm flaring badly still and being tested for IBD. My stool test shows inflammation (calprotectine) and I'm having a colonoscopy again. My reumathologist doesn't put me on biologics because he thinks my AS is mild, he has treated me with Cox-2 and NSaids in the past but as I don't have the HLAB-27 gene he thinks my condition is mild. I only had a bad flare when I was diagnosed 6 years ago and in the las year with the Covid vaccines I've had 3 but never with GI issues like now. I feel down and at times I fear of the future because I never thought I will get to the point of feeling so bad and trying so hard to fake to be ok for my husband and kids. Having constant GI issues has put me off many things I used to do to manage my AS. I do still swim. 4 or 5 times a week. I was a swimmer when I was young and i believe that is part of why my reumathologist thinks I can just go thru it with the exercise. I'm afraid my gut is now inflamed due to so much untreated inflammation but I guess I will never find out if that was the reason. Will it get any better? I hope so....
1. James Hollens Moderator & Contributor
 Hi <inline-mention username="Phiguera" user-id="4818071"/> Sorry to hear that the flare is still going on and I hope that ends soon! Fingers crossed that this colonoscopy is able to find some answers to help the doctors come up for some solutions for these problems you are having. Have the treatments that they have put you on helped you much so far? From my experience, the NHS can sometimes be a little hesitant to put people on biologics because of the expense of it. I remember they made me try some alternative treatments for a period of time (I can't remember how many months it was exactly) before I could apply for my biologics. If you find that these treatments haven't been helping you so far it might be worth trying to push to see if they could apply for biologics for you too if this is something that you wanted to try. I have felt the exact same way about the future myself before. But I think it is important to remember that even though there will be some tough times with these conditions, the good times will also come too! Hopefully once they get to the bottom of finding out what is happening with your gut you will be able to get the right treatment and start experiencing these good times more often! Wishing you all the best, James (Community Member)
James Hollens Moderator & Contributor
 Hi <inline-mention username="Phiguera" user-id="4818071"/> Sorry to hear that you went through so much for so long on your way to getting a diagnosis. I am in the UK too and just like you I went through a whole bunch of misdiagnosis before they finally found it to be AS. I love that you are staying so positive and you are absolutely right we are not alone in this, this is a battle that we are all in together! How comes your rheumatologist is refraining from putting you on any treatment at all? Have you considered maybe switching hospitals to see if you can find a new doctor that is willing to try you on these things? Have you been able to get your hands on anything to help manage your condition? I hope your flare eases up soon and you are able to get the treatment and relief that you need as soon as possible. Wishing you all the best, James (Community Member)