Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group When did you first start having pronlems

Hello my name is Tina and I was wondering when everyone started having problems and how long it took figure out what it was? I started having problems over 12 years ago it all started with a frozen shoulder had that worked on by a doctor bit costs to much and did nto have insurance then it got worse so I went to see a ortho doctor he gave me shots till it stopped working so did surgery and forced it to move he told me if that did not work I would have pain and I did when I finnaly went back to see him my arm had diclocated and fussed so I went to Hopkins and had a total shoulder replacement he told me that I would probbaly not be able to use it from the elbow up but would not have pain so I doid it then I started having pain in my neck and it became fused my other shoulder was giving me pain also at this time I went to many docotrs and none of them knew what was wrong with me I thought it was the end when I went to Johns Hopkins and they could not help me because they are supposed to be the best. then someone told me about the Mayo clinc in Flordia it was there that I found out that I had AS people think hopkins is the best but from what I saw the Mayo Clinic is by far number 1. I know what we have sucks but I spent years trying to figure out what I had I always new that there would not be a cure for it but to have a name for it so I ciould plan my future is what I wanted there is nothing I can do about it so I am just glad to have a name. I have read several posts and I can see that there are people a lot worse then me. I also found out at the Mayo Clinic that my spine is fused also dose anyone else have this problem,

Tina

Hello and welcome. My symptoms first started when I was seven. It was misdiagnosed. I didn't find out I had this until a year and a half ago. As for the Mayo, I am on the waiting list, for Arizona. I can't wait to go. They are looking to connect the dots on me. I have many overlapping symptoms. So, even though I have diagnoses, they still think they are missing something.

Wow that is strange because I have other problems to I have had weak musscles sence I was born and they are not sure why so they said I should to the one there also I was in flordia and I cant say enough good things about it was the best place by far. What symptoms do you have related and not related to AS I was never misdiagnosed just did not have one maybe if I had known I would have done things different. what treatment are you doing now. I have enjoyed talking to you and I wish well at the Mayo Clinic keep me posted.

I gave you a lengthy answer. Then my computer glitched. So a brief one. I was told most of my ailments was stress related. Then things started falling apart about twelve years ago. Started with my stomach and then eyes. Each was dx seperately. Then I got really sick two years ago and that is when they could not rule out real problems. So last year all the pieces fell into place. But like I said they think they are missing something. That is why they are sending me to the Mayo.

hi looney:

good question. it's always interesting to know long it took for us to get diagnosed.

for me it was close to 12-15 years to get diagnosed. i would limp from leg and back pain as a kid and being female, no one ever suspected AS. once i got to college, at age 18, i ached all over, thinking it was heavy books that caused me to hurt so much. it hurt to sit on the floor and i couldn't stand for very long. even lying down hurt.

i was so relieved that i got a diagnosis: it was intially diagnosed as a slipped disc. i had traction, physical therapy and nothing worked.

i was sick of having tests and seeing so many doctors. i was about to give up. everyone around me thought i was a hypochondriac.

one doctor was smart enough to order a bone scan. both SI joints were inflamed. i got sent to a rheumy for a diagnosis. with anti-inflammatories and prednisone, i started feeling better and could actually function.

sorry for the long explanation.

thanks, leslie


http://islandtails.honadvblogs.com/

Hi, Tina:

I began having AS symptoms three years before the HLA B27 tissue type was linked with "Marie--Strumpell's"...aka Ankylosing Spondylitis.

But it took eight years for the diagnosis, despite the fact that I had 'classic' symptoms that began with severe sciatica, progressed to lumbago and costochondritis. My neck only fused after (and I believe because-) I began taking NSAIDs. Before the NSAIDs, however, I had adhesive capsulitis right shoulder first (ended my racquetball career) then severe left shoulder bursitis.

Although I now avoid doctors as much as possible, but my disease has progressed so that most of my back is fused and I have had C7 removed (20 hour surgery) and there is plenty of metal holding me together.

AS symptoms are fully under control thanks in total to the combination of antibiotics, fasting, monodiets and the starch-excluding diet. I would counsel anyone with AS to not take too long before eliminating starch from their diet--AS is a monster freight train that does not stop so easily.

Good luck,
John

I started having problems about the age of seven as well. My pediatrician said they were growing pains. As I got older I had a number of sports related injuries, including some to the back, so my problems were attributed to that. By the time I was in high school, my symptoms were much worse and it was clear they weren't sports injuries.

I went to a lot of doctors before being given a proper diagnosis. One rheumy told me it was muscular and took me off of NSAIDs. Others shrugged and gave me pain killers.

I even had a GP that decided it was all in my head. She made a note in my chart that I needed to talk to a psychologist before I could have more T3 or Ambien (seriously). There's a story along with this, but I don't feel much like writing it all out now.

I finally got diagnosed by an orthopedic surgeon who I saw in 2000 and then went back to in 2002. He came back after looking at my x-rays and said, "You have ankylosing spondylitis, find a rheumitologist. I can't do anything for you." That was it. No scripts, no suggestions on who to see. He also got out of the room as fast as possible. He didn't want to answer any questions about what AS was or how living with it would be.

That's pretty much the short version of how I was diagnosed.

I have to agree with DragonSlayer. Try the diet. I went on the low starch doet and I notice a huge difference when I eat startch. Tons of info on the diet on the forum.

I had low back pain that started in 1998 at age 21 and was diagnosed in 2005 at 28.

I started having problems when I was 14. They were minor. I would get stiff, and I could not sit in one place for very long. When ever my stress level would go up I would get back pains. At 22 I went to the doctor with a sore back. He said you have arthritis and gave me a 2 week prescription for indomethacin. It worked wonders, but about a month later the pain came back. I went to a doctor who specialized in arthritis. He immediately said you have AS, but I want you to get a blood test to confirm it. I was hla-b27 positive.