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A MySpondylitisTeam Member asked a question 💭
Holmfirth

I’ve just read an article on I think it was called spondylitis osteoarthritis. The symptoms fit me exactly I was told I had cervical spondylitis 8 years ago given pain killers an left to rot. Exactly what it said about not showing up on X-ray. I’ve been made to feel like a fraud every time I’ve tried to explain what’s going on with me . How do I go about being tested for this .does any one know any thing about the faulty gene associated with this form of spondylitis. Any information would be… read more

May 25, 2020
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Answer Summary

Members rallied around someone struggling to get diagnosed with spondylitis after years of being dismissed and treated like a fraud by... Read more

Members rallied around someone struggling to get diagnosed with spondylitis after years of being dismissed and treated like a fraud by doctors, with the overwhelming consensus being that getting an MRI and seeing a rheumatologist are essential next steps since regular doctors often lack the expertise to diagnose autoimmune diseases. Several members shared their own diagnostic journeys, including one who went 40 years undiagnosed until a rheumatologist connected their various symptoms, and another who emphasized that blood tests for the HLA-B27 gene, imaging studies, and inflammatory markers like sed rate can help tell the full story even when X-rays appear normal. A recurring theme was the exhausting but necessary work of being your own best advocate, persisting through medical dismissal, and finding validation and practical guidance from others who have lived through the same painful experience of being ignored for years.

A MySpondylitisTeam Member

@A MySpondylitisTeam Member yes your right, we sometimes have to find our own way out of our pain when we cant get help. It can sometimes lead us to a worse hell, but we learn what works and what doesn't. We all have to find at least temporary relief, wherever we find it. When we cant sleep, or function its horrible, and its worse when we don't understand why. At least here you can find some answers of your own through people who know first hand. All the best to ya😄

May 25, 2020
A MySpondylitisTeam Member

Be persistant!

July 29, 2020
A MySpondylitisTeam Member

I got diagnosed by accident, but I said it’s God who answered my prayers. I am been having problems with my bones since childhood, later was eyes problems, rashes, jaw problems, Crohn’s diseases, surgeries, back surgeries. No one took the time to look at all my different illnesses. 40 years suffer. A year and 3 months ago, I went to see my Primary doctor because I had a lot of problems with tiredness, when I was talking with my PDoctor, my shoe fell, my doctor look at my foot and ask me since when I was having my toes getting purple and my legs had big bruises” I told him, I have this problem for many years, I told you before. My doctor send me to lab tests and call me in 4 o 5 day’s later, first he told me I was positive for lupus, he send me with a Rheumatologist, more blood work, x-rays. My Rheumatologist told me no it’s not lupus, it’s Ankylosis Spondylitis, you have all the signs and symptoms, that it’s why you had to have a laminectomy, and you have Psoriasis arthritis a mild case. I am now in biological medicine call Enbrel, and it’s working, it’s not a cure but helps with the pain and inflammation in my body.

May 26, 2020
A MySpondylitisTeam Member

There's a blood test for auto IMMUNE diseases.and get imaging of the affected area. Ask to be referred to a Rhematologist and pain specialist. A primary doctor cannot treat you.Please don't wait. 💓🙏

May 25, 2020
A MySpondylitisTeam Member

I tell you, sometimes we need to be our own doctors. You will need to be your best advocate, which can be exhausting. I was finally diagnosed from a orthopedic doc. I had to see him twice, after the treatment for his first diagnosis was ineffective.

December 3, 2020

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