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Ankylosis Spondylitis

Oct 07, 2015 3:45 PM

Started suffering low back pain in my early 20's. It gradually moved up into my neck as well. I tried everything, nothing worked and no one knew for sure what was wrong for 18 years! I was told everything from its in your head, it's fibro, to your just trying to get drugs.
It wasn't till a couple years ago when I was finally in the ER that a Dr. was able to ask the right questions and put two and two together along with an MRI (after serious damage was already done) did I get the right diagnosis.

Turns out to be a specific form of arthritis that mainly affects the spine of young men.
I now have a great rhumatologist and a decent pain specialist and together we are finally working to delay further damage and help reduce the cronic pain.

I could go on for a while about my experience but I'm looking to here from others with this debilitating disease. I suspect if you haven't been down the same path you just won't truly undertand.
So share your experience with me. I bet I can relate.

Oct 09, 2015 2:54 AM

Yes , there are lots of people suffering from ankylosis spondolyties . Me too . My hip and neck get fixed , I am diagnosed early but my drug didn't work or my life style affect badly to my health , two physical trauma and two mental trauma totally crash me . And increase the severity of my diseases and debilitate me , I took sulfasalagine but it works peripherally but increase pain in spine , I took mtx also for a long time , pray for me

Oct 09, 2015 3:39 AM

I have fibro and god knows what else until I see a decent rheumatologist. So I can't relate to your exact diagnosis but can relate to pain. I have suffered with lower back pain since I was 13. They blamed a car accident after I was hit at 70 mph crossing the road. But the pain has been with me for years. It has slowly moved up my neck and cause me to stop what I'm doing. Now I've been diagnosed with fibr and everything is blamed on that. Hoping to see a new rheumatologist this year. Who will actually take the time to look at me and not just agree that I thought I had Fibro amongst other things, and then sign me off. I'm glad your getting some help and wish you a pain free life x

Oct 09, 2015 10:23 PM

Ankylosing2003, I'm sorry you have damage from delayed diagnosis and treatment. But it's really great you have a good doctor. I have fibro, sjogrens, Hypothyroidism, OA (& many others) throughout my body so I can empathize with you on how debilitating our health can become due to delayed treatments. It's hard getting docs to listen and rake us seriously many times, especially after we're tagged with fibro. Hugs, and you'll be in my thoughts and prayers! 🙏🌼

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