Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group How did you know you had AS?

Hi,

What type of symptoms did you have to lead you to a diagnosis of AS? My Rheumy says AS doesn't manifest this late in life so I don't have it even though my father & brother have it and I tested positive for HLA-B27. I do have lower back pain, neck pain, shoulder pain which she attributes to degenerative disc disease, bursitis, and calcified tendinitis in my shoulder.

Thanks for any info you may have.

Be well,

DebbieZ

I went to doctors for 30 years with various symptoms. It was not until I figured out what it was and and my suspicions were confirmed by a visit to a Rhumy that the dx was given this was at age 52. I know that AS can be masked under different cloaks until later in life. Even when fusing I had a dx of bone spurs. Good Luck. by the way on the course of the AS it was suggested that I had all of the conditions you mention.

I had the same experience as Smed. I've had AS for years and years but was only recently diagnosed. I knew I had arthritis, but thought it was osteo and that I just had to live with it. My Dad had AS (he passed away 17 years ago) and we were always led to believe that he had developed it because of an undiagnosed broken back during WWII. The injury was probably the catalyst, but I didn't have the foggiest that it could be inheritable and never even considered that I also had it. It was actually a relief to receive the diagnosis, now at least I know that I don't have a dozen different things wrong -- it's all part of AS.

mimi

Hi DebbieZ,

I like so many others here have had symptoms for over 30 years. I was just dxed a year ago. What a relief it is knowing that all this pain wasn't just in my head. Now I'm getting treatment for AS instead of so many other causes for my pain. I'm B27+ as well.

I think finding a Rheumy that is up and current with AS is giant help. My question to you would be, is your rheumy the same one as your father and brother see? A possible second opinion may be in order.

Take care,

Fred

I'm really only 18 years old. I have 35 years experience at being 18 years old.

Hi, DebbieZ:

AS: 1 Rheumatologist: 0

The most famous AS case was atypical for age--Norm Cousins.

I'm a classic case and it took 8 years for them to diagnose. My symptoms were almost totally confined to sciatica that moved from side to side, then lumbago and finally spine lock-up by the time of successful diagnosis, based upon blood test and then X-ray AH-HA!

Each condition you are experiencing is a well-recognized related complication of AS.

From reading this forum for years, I believe that women do not generally get classic symptoms and are therefore much harder to diagnose; some never exhibit the X-ray changes required by the die-hard knuckle-headed doctors who prefer waiting for damage (at who's expense?) and ignore early signs ('pre-AS'), and still could not treat ANY CASE of AS properly, even when they accidentally get a diagnosis right.

Please have your rheumy call each of us and tell us who not to go to!


If she tries to send you a bill for her lies, just return Dr. Mercola's recent comments:

No surprise here. I have great disdain for nearly all rheumatologists as I believe that this is the only specialty in medicine that has absolutely no reason to exist. They only prescribe symptomatic therapies that in no way, shape or form treat the cause of disease, and most of the drugs they recommend wind up devastating the health of those with RA.

[excerpted from http://www.mercola.com/2003/aug/30/ra_drug_therapy.htm]

(sorry, I was a victim for many years)
Best Regards,
John

Hi,

Thank you all for your responses. It seems even with Neurologists whom I see for Multiple Sclerosis want to wait until your have serious symptoms before they will do anything.

My General Practitioner has been the only one who has taken an active part in my care. He really listens to me and does something about it. I went to see him today because my back & leg pain have increased over the last 6 months. I also have parathesia, edema in lower legs, and bladder problems. My last MRI showed a disc encroaching on the spinal cord at the T11&T12 level. He's very concerned. He's sending me right away to a Neuro-Surgeon to have a Myelogram. Yikes. I just looked that up and it looks brutal. Anyone have one before?

Just love my Doc. A message to Fred - my dad passed away many years ago and my brother and I have not seen each other since I was five. I'm 48 now. So no clue on who he see's.

Take care,

Debbie

I dx'd myself with info found on this site and decided the physician treating my recurrent iritis was my best bet. So I was dx'd with AS in 2001 at age 40 by my eye doctor. My first doctor visit for low back pain was in the mid-'70's.

Age of diagnosis means: how many quacks did you have to go to before you found one smart enough to figure it out.

Hugs,

Cindy

I am only one; but still I am one.
I cannot do everything.
But still I can do something;
I will not refuse to do the something I can do.
Helen Keller

Hi DebbieZ

I was rx'ed with ra when I was 15 so I knew that I had arthritis . But I stopped going to my old doctor for this because nothing was being done.I still went to see him for any other little problem I had though. But it wasn't until he retired and another doctor took over his practice that I went for a checkup because my arthritis was really bothering me.
He ordered tests and such and everything came back neg for the ra. So he said he couldn't explain why I was having the pain I was having (never once did he think that the pain wasn't real ) So he refered me to the only rheumy that was here.
He examined me rxed me with as in no time. Then he ordered the tests to confirm it.
I thought he was great then. But that was as far as he would go. No follow up tests or anything. I stayed with him for 3 years before I said enough was enough.
I just go to my regular doctor now and get better treatment for my arthritis.
So I had no problem being rxed. It was after that sucked

But you have all the same pain that I have.I am HLA-B27 positive.
My lower back pain is from arthritis and fusing
I didn't mention the neck pain and stiffness to my doctor so I am not sure what that is and do I really want to know. I can only fix one problem at a time.
My shoulder pain is sever arthritis in the shoulder.

So you see I don't think age has anything to do with it. It isn't like we wake up one morning and have this. It just takes awhile to get around to finding out what is wrong.

But if you are able get a second opinion.

Take care
Valerie

Hi Debbie,

I had neck pain for years off and on, and thought it was due to an old injury. I was diagnosed with AS after a bout with Iritis. My rheumy asked me if I ever had joint pain, at that time I said no. My joints just felt like they wanted to pop all the time. She then asked me if I ever had neck or back pain. I of course responded yes. She then ordered the HLA-B27 tests and a DSDNA test. The DSDNA was negative, so she ruled out Lupus (which was what I was worried about because it runs in my family), B27 was positive. This happened at my current age, 41. She said that the disease was just now "declaring" itself. Who knew! It never even occured to me that my persistant neck pain was a disease!

Trinka

0 wait ......they told me before I had problems!!!

went the rhemy for another problem....knee pain. Before leaving, he told me that he was not worried about my knees....only my back! I was shocked. Why my back???? It is fine!!!! He wanted to run test to see if I had something he called AS ......I ran out of the door thinking that he was a quack. I refussed the test. Nothing was wrong with my back!

Than three years later when studying for a national certification as Rehab Counselor, I ran across info on AS. I read and reread the text in the book. Oh my!!! That is what I have. I than remember that prior doc visit.

So I made an appointment with another rhemy in the same practice. I went in the door and just told him that my back hurt. Nothing else. He said it was either fibro or AS and that he wanted to run test.
Test came back and he told me that I had AS.

So both docs were onto this AS thing and I had barely been in the office for 15 minutes.

Betty