Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group how old when diagnosed/took AS serious

I am just wondering how old people here were when they got diagnosed. I am a 22yr old female, and I was diagnosed when I was 18...watched by my doc since I was 9yrs old.
I am just starting to take AS seriously. I don't really let it stop me from doing whatever I want (I am hugely athletic, I work with kids and am always carrying them around, and I'm a college student). Recently I am finding that the the longer I sit at school the harder time I have, or the more I stand up and play with the kids the more pain I have...I have even had to stop pushing the kids on the swings, which is my favorite thing to do at recess!
I don't really know what this post is about. I guess I don't really know how serious AS is, or how long it takes to affect people. I mean, I have looked all over the internet, I have gotten all kinds of information, but it just all jumbles in my head and my brain just can't hold onto it. I mean, I am very bright, and have no problem grasping any other concept except this one.
What do I have to expect? Is there anyone else here my age...from what I know it is rare for a young woman to be diagnosed with AS.
I would appreciate anything. I feel like I am lost in the open sea right now :/.

hello Jakira,

Welcome to Kickas, this is a great site and you took a great step for your AS registering here. I was 27 when properly diagnosed, had symptoms for little over a year prior to diagnosis.

AS is very individualistic it appears in that some have mild symptoms and others more severe. My father was told he would be in a wheel chair at 45 (had AS since mid 20's as well, but not diagnosed for 10 years). But he still works as a teacher and is now 64. I have had AS for 12 years now and do very well.

Others that post here have it much more worse off than I or my father. They are unable to work and live with a great deal of pain from day to day.

MY ADVICE - learn all you can about AS, the more you learn the better you will be able to make informed decisions on your treatment. Many options out there with medications, diet (I have been on diet 5 1/2 yrs), supplements, exercise etc....

It is up to you to take those steps to learn. Many here know much more about AS than their doctors.

Best to you on finding answers.

Tim

Hi Jakira & Welcome!

I agree with Tim 100%.

I was 28 when diagnosed.

One thing I would say is don't stop living, but know what you have and treat your body as best you can, you will have good days and bad.

With you being young you have lots of hope, they are finding new things to help us all the time.

You have made a great connection here, we have many smart people here about AS and those of us like me (maybe not so smart)..lol you still have alot of support and friendship when and if you need it.

Hugs,

Lisa

Hi, Jakira:

Quote:

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What do I have to expect? Is there anyone else here my age...from what I know it is rare for a young woman to be diagnosed with AS.

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Expect the unexpected; there are very few good surprises with AS. The course of this disease might be totally up to you.

I wish that somebody could have given me a glimpse of the future; I would have chosen an alternate one...

I am a male and was diagnosed at age 27, but had symptoms starting at age 20-1/2.
In the early stages, my disease was severe, but I got a handle on it by fasting, but also made the mistake of becoming a vegetarian because of all the hype about RA and initial good results. Athletic budding tennis star in college, but after I got over the initial stage of AS (fasted 20 days) I was able to place very high in racquetball tournaments and did a lot of backpacking, surfing, and skiing (both).

The biggest mistake of my life was caving in to NSAIDs at age 36; the combination of diet plus these drugs greatly accelerated my condition and I quickly became hunched over with a totally frozen neck (age 41) and developed iritis, plantar fasciitis, and kidney stones--the latter two being absolute signs of severe osteoporosis.

Although today I have not had any classic AS symptoms for almost nine years (due to diet plus antibiotics), I have had operations for broken back and an osteotomy to get my chin off my chest. The surgeon commented that my spine is the consistency of wet drywall.

Had I been advised of diet, and the true cause of AS early enough, I would have avoided the severe damage I am now stuck with and the current status of again-fractured lower back and looking toward yet another 'procedure.' The cause and proper treatments for AS has been well-established since 1983.

There is no magic rheumy and no magic pills--AS requires a very big effort on the part of the patient; few are willing to make the necessary changes to overcome this disease, but I hope that you are one of the successful group,

John

I was 20 and was straight onto Naproxen. I take it very seriously because if I let my pills lapse and have a bad day, i'll be laid out in agony with an attack.

I've had 3 major attacks so you could say I'm a slow learner. It's just on the good days your thoughts start straying to trying to get off your dependency on anti-inflammatories.

Like you, I was 18 when i was diagnosed. I was just starting university and everything was scary. I didn't let anything stop me though. I went through a child psych degree and primary teachers college. Went to Australia for that and loved backpacking around the South Pacific. Now I am a full time nanny for a 14 month old. It pains me but i love it. I am currently on Arthotec and it seems to be working well- although right now is a flaire up because of the dam damp wether. I have had to make adjustments to my life over the six years in how i handled the disease. I couldn't sit through a three hour lecture without walking around, so i placed myself at the end of the row, near a door. It sucked not sitting close to my friends - and i didn't want to disturb the class at first, but what's more important then your personal learning?

Feel free to PM me if you have any questions:) Welcome to the site. It has been a
huge lifesaver to me and many others!

Hugs, Samantha

I was 23

Hi Jakira!

Welcome to the board and take a deep breath.
The folks here will help you wrap your head around this whole AS thing. Ask any question, you'll get an answer,as there are so many here in different stages of the disease,with different symstems and various ways of dealing.
To answer you question, I think someone already said it, but expect the unexpected. You never know with this disease as to what you'll be feeling from one day to the next.
I am a female with AS. There is lots of us here.
I developed symtems between the ages of 16 and 17 and I wasn't properly diagnosed until I was 23. I'm 38 now.
I've just tried to keep a positive attitude, though that can be hard sometimes and keep living as you do. I use to work with kids too! You'll find you will adapt to how you do things to make it comfortable for yourself.

I might have had some symptoms in my 30's but they always went away.

My shoulders started getting stiff at age 43.

By the age of 45 I was severly ill with pain, stiffness, fatigue. I was hunched over, could not put my head to the wall, could not expand my chest, could hardly put on my pants, underware and socks.

At the age of 47 someone told me about Magneisum Citrate (Natural Calm was the product I used) and I looked it up on the internet. I started feeling better immediately upon using this absorbable form of magnesium.

Before onset I was on a high fat/high protein low carb diet that was taken to extremes, for serveral years. I now eat lots of Fruits Vegetables and whole grains. I cut way back on cheese. I used to drink 1/2 gallon of coffee, but now I limit it to a quart or less.

I also now live in a place where I get better sleep.

I am improved by about 80% now. Getting dressed is no problem.

Hi Jakira,
I was 39 when I was diagnosed, but now looking back my SI pain and stiffness began in my early 30's. I was diagnosed with severe difficult to treat iritis.
I found this site right away and decided to try to NSD, which I thought I could never do because I was a vegetarian. 1 1/2 years later I am mostly NSD except for cheating, which I guess makes me LSD, and completely control my stiffness, iritis and aches and pains. Hope you can give it a try and stop any further damage to your body. you have the power and the choice, you just have to decide what is most important to you. I wish you the best of luck. Take care,
Alecia