Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Want to hear stories about before dx

As that is where I am still at.
Were you all discouraged when lab work would come back negative? Or did it?
Did you spend hours reading about your symptoms trying to figure it out when doctors were saying there was nothing wrong?
I am second guessing myself.
I DID have a neurologist tell me he felt I had something complex and my symptoms needed to be picked apart. He is the one who ordered the xrays to check for the arthritis. (found it!) He is the one who told me he was willing to be part of a team of doctors who would help me. (that scared me, I needed a team? what did he see or suspect?)
Any worries about things like...a job? and how long you will be able to do it?
DO others have the cognitive brain issues like I have?
I have so many questions. I need to make so many changes. I am not feeling AS overwhelmed as I was and am no longer thinking I need to move out and into a teeny more managable place but instead am thinking of how I can get this under control so it won't affect my family as much.
That is all.
Just want to hear your stories.
God bless ya, all of you and so so thankful to have a place like this forum to run to...

A team of doctors is a good thing. I have my GP, Rheumy, Ortho (still looking for a new one in town) and have dealt with Gastro and Neurologists.

One thing I did was write down ALL my symptoms from my eyes to my toenail. with every doctor I saw, I gave them a copy of the list and insisted that they put it in my records.

My images were ignored (including the erosion of my SI joint), my symptoms were picked apart and dealt with individually (so they never got better because they weren't treating the cause)....until I saw the Rheumy whom I had to insist upon seeing.

30 minutes of readying my symptoms and viewing my images and I had my diagnosis even though I am HLA B27 negative.

Too bad I had to wait until I was in my late 40's to be diagnoses. Females have a much longer time to get diagnosed. Luckily, I never got slapped with the Fibro diagnosis or I would never have been treated for the correct ailment.

Asking for our stories is a great idea for a post and I imagine could benefit many who are just starting on the path to diagnosis.

In my case, I was 18 yrs/old and had always been perfectly healthy. One day I was struck with an awful stomach pain so my parents rushed me to the hospital emerg. I was seen by multiple ER docs but they didn't know what was wrong, gave me a strong pain killer and sent me home. I distinctly remember walking down the hospital corridor on my way out and noticing that I had a bit of pain in my left hip that was making me limp.

That stomach pain never came back but by the next morning the pain in my hip was much worse... and it continued to get worse everyday. Even though I couldn't walk without limping, our family doctor thought nothing was really wrong, it was 'all in my head', that it was stress related. The only thing causing me stress at that time was the fact I was in constant pain. I knew something was seriously wrong and I sensed it was never going away. I had no concept at that age of anything but good health... when you got sick you always got better - right? And yet at the same time I knew this wasn't going away, regardless of what the family doc said.

We started asking the doc to send me to different specialists. I remember one guy, an orthopedic bone specialist of some kind, took 6 months to get the appt,... he checked me for all of 5 mins and declared nothing was wrong with me. I protested that I couldn't walk for the pain and he responded that he had patients that couldn't even get out of bed.

I'm old enough that way back then there was no internet (imagine that!), so no method of googling symptoms.

One day, I read a sign on the subway that I'd seen a many times before.. it said "You are never too young to have arthritis" Just plain white text on a black background. I thought hmmm. Back to our family doc I went and basically had to insist on being sent to a doc that specialized in arthritis. My family doc said, "You are too young to have arthritis" and I argued -- that's not what the sign on the subway thinks!!

I was sent to a Rheumy who listened to my symptoms and immediately ordered xrays. He showed me this white cloud of bone that was obscuring my SI joints, and then (despite me being female) diagnosed me with AS at that first appt 33 yrs ago. It was 2.5 yrs after the hip pain started and already obvious to him on xray. Later on, he did the HLA B27 test and was not surprised to learn I'm positive. He was an excellent doctor and had such a nice manner. He passed away last year, only 1 yr after retiring and I cried when I heard the news. I miss him very much.

I don't believe that cognitive issues would be related to AS. That symptom may be a related or an unrelated piece of the diagnosis puzzle for you, I imagine.

Keep going - you can do this, whatever this turns out to be! You will find you are stronger than you ever realized you could be.
All the best

When I was 14 I was the point guard on a backetball team. We had a very good team. Every game during half time every one else on the team would sit down, and rest while listening to the coach explain the stategy for the second half. I found if I sat down I would stiffen up. To avoid this I would pace while the coach was speaking. That was the first sign. When I was 19 I served a mission for the LDS church. I found that every time I was moved to a new area I would get a sore back for a few days. I thought it was just getting used to a new bed, and didn't think about it much more. After my mission I went back to college. I still kept a physical lifestyle. I was running, I raced motocross at the local raceway every thing was great. Then one day I got a sore neck. I tried a heat on it. I tried a new pillow. It would not go away. I went to the family physician. He told me looks like a case of arthritis, and gave me a prescription for indomethacin for 2 weeks. The pain was gone. I thought it was like an antibiotic you take it for 2 weeks problem solved. I think I was about 23 at the time. Life was starting to get more serious as I was looking at getting married to the girl I had been dating. I was a physics major in college, and I was feeling pressure from school.

A few weeks after I finished the indomethicin Rx the pain and stiffness in my neck came back. I was going to go back to the family doctor, but my mother made me an appointment with a rheumatologist. He did his exam, and told me he thought I had Ankylosing Spondylitis. He said he was sending me to get some blood work done, and that would let him know if it was the correct diagnosis. The blood work came back positive for HLA-B27. The arthritis has been with me ever since.

Just look for the good things in life, and let the bad things pass by.

mig could sell you a book with my grim tale!!

Docs and rheumatologists knew I had an auto-immune disorder but couldn't figure out which one it was for a while because my symptoms and test results weren't a perfect match for any specific one. I had raging high CRP and ESR (over 100 eventually) so it was clear something inflammatory was going on.

There was a brief suggestion of lupus, then AS was considered. That's when I found KA as I searched for information about it. Shortly after, the second rheumatologist concluded it was seronegative RA. A third rheumatologist confirmed it. I had a long delay before proper treatment because I was terribly nervous of methotrexate which is the standard treatment and wanted to try alternatives first. It was pretty foolish of me because while I tried various other options and my inflammation continued to rage, several joints suffered damage including my hips, shoulders, knees, ankles, and toes.

I didn't know about the damage at that point. I was just in terrible pain and on high doses of opioid pain meds. Eventually I gave in and went on mtx. It took quite a while to bring the RA under control. I was also on prednisone for about a year, tapering it off very slowly as the mtx began to work.

I now have two replacement hips. I am missing a tendon on one shoulder as it tore off completely and can't be reattached. Two toes are quite badly bent so they can be problematic if I walk too far. The other damaged joints are holding up.

However, having said all that, my RA is now well controlled and I am off all pain meds other than Celebrex.

I am not an authorized dealer ... but I have read Alan's book more than a few times and it is excellent!

Link to Amazon

you are modest though, failing to mention your miniscule part in its production....lol well the drawings are good at least

Age 15 doc said I had the structural Mobility of a 65 year old
Age 26-42 while ribs were fusing and heal pain started doctors said gout to checking heart and lungs etc Age 36 shoulder pain dx bursides age 43 first test ran for arthritis blood work all blood work came back negative Dr told me I was lucky did not have any of the bad stuff-- Age 44 x-ray of back Dr said where my back had been fused surgery looked good the fusion was a success-- I said I have never been operated on-- Nurse who gave me results said I don't think I have ever seen bone spurs that long. Age 48 back x-raied again doc who read x ray suggested As but because blood work HLAB27 negative I was never told by my GP-- Age 50 my son was doing rounds on his rotations at a Hospital for Pharmacy School -- He called me and said I know what you have I have just seen a man in similar situation and Training doctor said it is a good indication If someone looks up with his eyes instead of raising his head that he has AS-- get to a Rhumatoligist-- which I did. I was finally dx with AS. Spine had totaly fused ribs were fused and some fusing in other major joints.














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Pizami, WOW...you encouraged me. I am dealing yet with feeling neurotic for my continual research as well as for my list I've been working on for what seems forever of symptoms through the years and current ones. I am 58 years old and no idea when this really started for me. I want to know but don't know if that's possible. Thanks for sharing with me...especially the part about having AS and yet being negative for the HLAB27 as my neurologist just told me yesterday that I couldn't possibly have AS since I am also negative. There is so much information or the unknown when it comes to the medical professionals. All the more reason that we need to be our own best advocate. Thanks Pizami!!!