Ankylosing Spondylitis: the dangers of late diagnosis

This video addressed to GPs highlights the problems patients with unresolved chronic back pain suffer while waiting for a proper diagnosis.

[countrygirl]

I am a 57 year old female. Recently diagnosed. I had the typical “growing pains” in both ankles starting at age 12. Later came plantar fasciitis in both feet. Then the lower back issues that were diagnosed as strained muscles in the back. Then came the sore, stiff neck which made it difficult to turn to look behind me when backing up a vehicle. Then came the tendon pain. Was told by one so called practicing physician that he couldn’t do for me what a good psychiatrist could. I cried all the way home then fired him. But, it caused me to give up trying to figure it out, for a few years. The pain became so intense I could not get out of bed. I had my first hip replacement at 54. Then came back injections in to the spine where my x-rays showed two bone spurs on a vertebrae. Finally, thanks to my husband, I now have a fantastic rheumatologist. After countless sleepless nights, I can finally get through about 6 hours of sleep before the soreness wakes me up. I am currently on Cosyntex and getting a little better. We are all strong because we have to be. Prayers for everyone that is on here.

[krimsonred]

It took almost 20 years of agony and countless doctors to get diagnosed with AS. The sad part is I literally had to figure it out on my own, and had to pay a Dr out of pocket to get the tests needed to confirm it. Its extremely disheartening to see so many people with a similar experience, finding answers shouldn't be this damn hard!

[tonyday]

My AS was diagnosed at age 22, having experienced pain for 5 years. I am now 71. It's been a long haul. I cannot imagine not having AS. If I were 'cured' I think my mind would reinvent it. I and AS are now one and the same thing. At the beginning I was in denial, then I thought I could cure it with exercise. Then came grief...a lot of grief. Then finally acceptance. It sounds a bit like the experience of losing a loved one and in a way I suppose it is. I think AS sufferers develop an uncommon kind of strength and determination that sees them through. Life is still rewarding and wonderful...never give up!

[rebel]

Late diagnosis made me go from 6'4" to 5'7". I'm angry. Can't play outside with my daughter. Just had a hip replacement 3 months ago. Waiting for approval for my other hip. It's hell. People need to hear about AS. Especially doctors. Having a rough time with this curse. My employer stopped working with me. Threatened to fire me because if I couldn't do my job. Here is a little truth about living with AS. If you have it then I'm sure you've had periods of time like I'm having. I'm sick of it. Just needed to vent.

[firefly]

Don’t give up… I’m almost 67 and just diagnosed recently. The prospect of new treatments offers me real hope for a better future. Reach out to your family Dr and insist on referral to a good Rheumatologist.

[hiendangpham]

11 years of chronic pain. Today I was diagnosed. There just not enough content or info on this.

[deborahhovan]

I wasn’t diagnosed until 25 years ago. I’m now 70 and have suffered so many complications. The only thing that helps me is to keep moving.

[minnietrout]

I was diagnosed around age 57. I already had been diagnosed with scoliosis in my mid-20’s. I’ve gone from over 5’7” to about 4’10”. The pain is all-encompassing. I call it ‘noise.’ I have a very loud life.

[BeeBee-tbit]

I was diagnosed with AS by Dr Lau from your clinic in '22 ! I am very lucky to have him. He is very, very thorough, caring and listens. Yes, it took me about 4-5 days to get the MRI for AS done, as they have special ways to do it. Beside Sacroiliac joint it included both hips aswell.
t Im very lucky to have dr Lau!. However I already had pain in that area for few years prior, but no one paid attention bf I met Dr Lau. Now, even i have Dg all is new to me bc i didn't know how much is connected with AS .It is very debilitating to live with it. Im definitely in more progressive stage of AS already.

[cephenb]

I started having back pain when i was 15.
16 year old me suggested to family doctor it may be ankylosing spondylitis cuz the symptoms all checked. She literally told me if it was AS i wouldn’t be able to do a toe touch ( after making me do a toe touch). Doco assured me and my parents that it wasn’t AS, and jokingly told me to be a doctor.
-21 years old and just got my diagnosis of.... ankylosing spondylitis.

[hassanfarooqi]

My AS was diagnosed at the age of 28 and now I'm 37 years old. In beginning I went through orthopedic doctors. But they were failed to treat me then
i went to rheumatologist at the age of 30. He told me that you came to me in well time, as no major damage was done to me.
He treated me with embrel injections for about 6 months course.

I was cured upto 90% and feeling fantastic, energetic and flexible.
Then by time again I realized that i m losing my health and then rheumatologist suggested me to take medicine (Sulfasalazine salt) 500 mg twice a day one tablet brexin.
I didn't take any therapy. I just play sports like badminton.
And I'm enjoying my life Alhamdulillah

[firebearva]

I was just diagnosed with AS and Psoriatic Arthritis at age 67 which is a very late diagnosis. It hasn't been for lack of seeing a doctor, just not the correct doctor. In my forties I went to orthopedic physicians for back and joint pain and have endured ten surgeries on every major joint. A two level cervical spine fusion, three level lumbar laminectomy and bilateral hip replacement, including surgeries on both knees, shoulders and hands. Even after all the surgeries I was still in chronic pain which made me decide to see a Rheumatologist who told me that I should have came to him 25 years ago, and I now wish I had. I regret that it took so long to be correctly diagnosed with AS, PsA and saddened that the many orthopedic doctors were unable to connect the dots. The damage is done, but hopeful that my quality of life will improve now that I am being treated. Update 2/19/20 Humira didn't work..

[AmandaDunagin]

I'm in Texas and it took me a year and 5 different doctors to get my diagnosis. My xray was normal but I'm so glad a doctor believed me and did an MRI. The MRI showed the inflammation of my SI joints as well as other joints. The doctor that ordered the MRI never thought to send me to a rheumatologist but instead to physical therapy. When physical therapy didn't help, I found another doctor and showed her my MRI. That doctor did a blood work and then sent me to the rheumatologist. It felt great to finally get a diagnosis and treatment that actually works. I see that I'm one of the luckier ones because I found the right doctors before damage.

[MimiDidi]

I have people stopped me in the grocery store or different places an asked me what’s wrong with my neck because I can’t look straight ahead. First of all, that’s kind of bold but when I tell them what I have, they have never heard of it. One time I had one person know what it was because they were a doctor. By the time I was diagnosed they told me that any competent doctor could tell that I had ankylosing spondylitis just from a simple x-ray because your spine starts to look like bamboo. Some people even call AS bamboo spine

[tammyree]

Carried the dx of Fibromyalgia for 26 years. My brother was dx'd with AS in his late twenties, i saw everyone i could and did everything i was told to treat the fibromyalgia. So much work, time and money. My SI x-ray was "normal" and my inflammatory markers were negative. But my pain and stiffness increased, my lymphocyte count kept rising and started having kidney issues. Finally a thoracic spine x-ray and a positive HLA-B27 test confirmed the dx just 2 years ago. I have mourned the "if onlys" and am moving forward the best one can. Good luck to all! ❤

[BiteSizedStories]

I was formally diagnosed with Ankylosing Spondylitis when I was 23 but I had been suffering with pain since I was 8 years old. I’m now 39 and I’ve had one major spinal surgery so far. Unfortunately, I’m on the more severe spectrum of the disease and have since been diagnosed with RA and PsA. But with anything in life you must persevere and live life to the fullest because you’re only here for a short time! ❤

[marlynj]

He was soooo easy to listen 🎧 to and understand! Thank you so much

[firefly]

I am so glad to see more is being shared, better info on AS. I too found a terrific Rheumatologist who carefully listened, investigated and diagnosed me with Axial Spond at nearly 67y - after 45 yrs of miserable pains and deep fatigue. I wish I could forget the shame and humiliation I felt as a young and middle aged woman when my symptoms and suffering were repeatedly trivialised, normalised, and largely diminished by ignorant doctors . I wasted thousands on Chiropractors, Osteopaths, naturopaths, physios, and radiology examinations, and so many Drs… I learnt to be silent about my suffering, and to develop deep compassion for my life and for others. It led me on an amazing and uplifting path of professional service to others. But the cost of unrecognised and inadequately treated AS has been a huge and wide burden to carry alone. I am so grateful that a series of synchronicities led me to my Doctor. I cry with relief at being believed, being seen and understood. About to commence biologics I now have hope for my future . I found tai chi and walking really can’t tell you how sad I feel for all of us - but just know there are ways forward. I am eager for my future for the first time in decades, many decades. I can’t help but wonder had I been a young man with my symptoms I would have been diagnosed in my teens ir twenties. I still hear stories from health care colleagues where Drs don’t look fir AS in women - and see their pain automatically as ‘ in their mind’, depression related, attention seeking, malingering, drug seeking, hysterical. It’s an awful disease, but hideous when not diagnosed or managed early and well. There should be more research and education, like this you tube- fir which I am very appreciative

[michellesmith]

Just diagnosed at 56. I’ve had symptoms for decades but blamed it on other things, doctors dismissed my complaints or honestly didn’t know what to make of it. It took a second round of not being able to walk bc of heel pain for a podiatrist to mention a rheumatologist. Why the GP or orthopedist never did still baffles me. I just started Humira so no relief yet. I feel like I’m 80 years old, I cannot do the things I used to do and when I feel ok I pay for it after being active. Dont be stoic, take matters into your own hands. You know when something is off.

[CyanMadness]

I am 26 and after being diagnosed last year, I have realized I have had these symptoms since I was 12 years old. Maybe younger. One symptom that always stumped me that I could not figure out, was sharp nerve pinching in my hip when I walk. I never heard of this disease until I got recommended to see a rheumatoid doctor from a chiropractor. I have 3 discs that are already partially fused. I am young but I don't see my condition ever getting better.