Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group can you remember..........

leslie,

He doesn't seem to be like a lot of others here, so I hope I'm worrying for nothing. Are you feeling better? You sounded better last time we talked.
Hope your holiday is wonderful. It will certainly be warmer

Never had eye problems either except now they are VERY VERY VERY dry.

aloha, my friend,

linda

Cheryl,
Hindsight is 20/20. We could all diagnose now that we've been through it. Yoga huh? I was taking a class at the Y and really pulled something in my neck. That was miserable for a few weeks. I can stretch in the water and walk a treadmill ..... what a woose

Love your Christmas sigs!!!

Happy Holidays!!

[[[hugs]]]
linda

No, you're talking about the cold air where Ray and Jeanna and Dan and Steph and Mars and John and etc live. The west coast of BC is much more moderate. We are the California of Canada.

George



Breb Assyl

Linda,

Hindsight is 20/20. Early signs for me?? Low back pain. Had it for 3 years. Mom finally did take me to the dr. He said, sounds like arthritis, but she's only 15, so it can't be that, and besides everybody has low back pain, live with it, maybe get some more exercise. My mom thought anything the doctor said was gospel, so I lived with it, and snuck a few tylenol now and then. And if Mom saw me holding my back, she would say, you just need exercise. I worked hard, a small family farm, carried a lot of water and feed, could pluck a chicken like nobody's business, rode bicycle for miles when I had the chance. I don't think I was out of shape. I was so relieved when I didn't have to take PE anymore in school, some of the exercises made my back pain a lot worse. Stress brought on my first iritis attack, 5 years ago. Then after a bit of research, I found that everything pointed to AS. The low back pain, the morning stiffness. I'm not worried much about my children, but they will not go through what I did. I have a daughter who is complaining now and then of back pain, I'll probably take her to my PCP sometime. I don't want her insides cooked up by x-rays, besides nothing will be shown on an x-ray at this early stage. My x-rays at 40 yrs of age, didn't show a whole lot either. And as for waiting for a diagnosis, what can be done anyway? I have a diagnosis now, for what good it's done me. The doctors I've seen now haven't done any more for me than that idiot years ago. I think I have rambled long enough.

Hugs,

Cindy

Hi, Cindy,

I'm not sure I agree with you, I think today there is a lot more out there to control the damage than when we were young, one of my major problems is the amount of mechanical damage I have from years of inflammation, resulting in DDD, a ruptured disc last January and 2 more ready to let loose, and a very bad ankle that was ruined from the inflammation. The new DMARDs have performed very well for some people - - look at Lori's Eric, 12 years old and in remission, hopefully it will help prevent him having to have his hips replaced at an early age or fusing. Arava, as I've said, is working for me, and hopefully also will prevent further fusing and further damage to my ankle joint and my fingers. The major problem isn't what's out there, it's what's between the ears of the average rheumy, this thing calls for a lot more aggressive treatment and better pain relief than most rheumies are ready to spring for, and also calls for an open mind. Last but not least, in the early stages of AS diet may be very beneficial, the time to start modifying a diet plan is before a lot of damage is done, even the LSD if your kids aren't able or willing to be so strict as to cut out all starches altogether. The LSD is easy to follow and offers a lot of choices in foods, lean meats, fruits, veggies, sweet potatoes, etc. I have rice occasionally, I love rice, and yes, pizza every once in a while, but mostly try to stick to this diet. It's also a heart healthy diet, good for life.

Cheryl


Sugar Magnolia wishes everyone a Merry Christmas. Woof!

I don't think there are any answers for me. The NSAID's and DMARD's I have tried have been a total failure. I have been allergic to everything I've tried, if the side effects didn't get to me first. Finances don't allow me to try anything else. What is there besides bigger pain pills?? I have always ate a healthy diet and stayed active. Maybe that's what has held off the fusing for so long. Things just changed that's all. I had 40 good years, maybe I should just be thankful for that and quit hoping for a future. Don't think it's gonna happen for me. I just live from day to day, and if the pain will let me, I try to spend my energy on my kids. Hopefully that is enough. Yesterday, I got the bill from the Cleveland Clinic, and it looks like I just spent a lot of money I didn't have on nothing. All I'm interested in now is pain relief. I'm getting used to the wheelchair, and life will go on. I didn't like stacking hay bales anyway. Hate to sound so down, but I have to quit chasing butterfies, and get back to reality.

Hugs,

Cindy

Hey Linda -

I have, for as long as I can remember, had musculo-skeletal issues. At the time we just passed it off on the activity of the day (horseback riding, ethnic dancing), but now I wonder if there was something more to it way back then. In fact, I remember tremendous right hip pain in grade 7 (1986). Actually went to school in a wheelchair because the pain was so bad. Of course, my 12 year old mind doesnt recall if the explanation we were given at the time was satisfactory or not.

Speaking from more recent times. I have definitely had symptoms since 1996, but was diagnosed in 2000.

I dont know what to suggest for your son - but I do wonder for myself, what might the difference in outcome be if I has known at the very least 4 years before (and at the very most 14!!! years before). Would I have less drug resistance. Would something less toxic than MTX or prednisone cut through the pain for me? *sigh* Don't like playing the hindsight game very much, because I have a feeling of what my answer might be.

My best wishes for you and your son. Definitely not an easy decision for any Mom to have to think about.

Love,
Jeanna


Happy Holidays!

Mine started in my hips, and before I knew it my pelvic girdle and SI were fused together, this after my doc said I was slightly positive when HLA B27 was tested! I was sort of lucky, I was on comp for a groin injury when I was 26 and had an Asian therapist tell me to have that blood work done cuz she didn't like the way I walked. Bless her trained eye, and yes I did find another doc and now have a great med team. I've got AS cousin Crohns as well.....

Doug

wanna lift?

Hi, Doug, just wanted to say welcome to KickAS! Love your car

Cheryl


Sugar Magnolia wishes everyone a Merry Christmas. Woof!

Thanx Cheryl, luv your dog...looks like my younger guy Buster the boxer!


Doug

wanna lift?