Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I need some inspiration.

Hello,
Could someone please share some SUCCESS stories and advice with me. I am getting very down about my AS and I just would love to hear that if I get my stuff together and start eating a low starch diet and excercise more that I'll be cured. I'm 28 I don't want to feel 58 anymore. I have another apt. w/ a new rhumy in a couple weeks but it sounds like she's gonna tell me I'm screwed and hand me a few Vicodin so i'll go away.
BONES

Hi Bones

I wish I could share my success story with you ... but I don't have one yet!!!

But there are lots of people that do ... and no doubt they will be sharing them with us!

I have been on the NSD now for about four weeks... no major drastic changes yet! The pain has edged off though...and hopefully it will continue to do so! I will continue to use the NSD as my weapon and perhaps you could try too...the thing is Bones what works for one...might not necessarily work for another!!! It is all a bit of "trial and error" except when you feel so much pain and tiredness it is difficult to make the decision to embark on something new...I only have one little hint...I thought it would be really really difficult before I started but I don't think it is as difficult as it sounds... you can PM me if you need some simple questions answered ... otherwise the NSD forum is full of brilliant recipes and suggestions on how to go about it!!!

Wish I could help you more... but stick around and I'll have a success story for you soon...I hope!!!!!

p.s. if you don't like your rheumy and feel that they are patronising you... look for another one! It's your body Bones and your pain!!!


Take Care
Ann

" Every problem in your life carries a gift inside it."

I have a success story. Well indirectly I do anyways. Eric my 11 year old son is the one with AS.

Before the AS hit, Eric was a normal 9 year old boy. Liked to play and run. Ride his bike and play basketball.

Then the AS got him. It hit him hard and it hit him quick. At one point, Eric was walking with crutches only. Could not walk on his own. When he got up in the morning, I would have to carry him to the bathroom and put him in a warm tub to loosen up. The boy is a trooper. He never missed a day of school except when we took him to the Drs. I think that he was only late one day because of AS.

Eric tried lots of different meds for a couple of years. He got ulcers, hives, mtx started to get to his liver. Through out his whole ordeal I was trying like hell to find the best meds for my son, something that would work, and not cause him a lot of damage. Then came Enbrel, and the fight to get him on it. Well needless to say after lots of tears, shouting matches with the insurance company, and research all over the place I found my angel. She worked at his pcp's office. I called her one afternoon totally defeated and said, that I knew there was a way around the system, I just couldnt find it. Well our angel found it. Eric went on Enbrel.

From the first shot he felt better. Slowly he was able to become the little boy that he deserves to be.

Our local fire department gave him the shots for a long while. Mom was just too squimish!! After a while, my husband started giving them, and then I would do it on a back up basis.

October of 2001 Eric had his last shot of Enbrel. Since then Eric has been on NO meds. NOTHING!!! Eric is in complete remission.

He is back on his basketball team, runs, rides his bike to school all days that the weather permit (which has not been much yet this year).

As a matter of fact, a month or so ago, his rhuemy fired him. Told us to call him when we need him, and nothing personal, but they hope that they dont see us back there again.

Eric does not remember the early days. He has a hard time remembering being on crutches. He knows to be careful of his knees, but he is just like every other little boy out there. As a matter of fact, when the rhuemy said complete remission, Eric threw his arms around the doctor and said "I am a normal kid again". My eyes were not the only ones filling up that day.

So there is my success story. Mine and Erics. We keep him active, and he is aware of what to look for in his body, and with Gods good grace, and lots of prayers, my son will stay in remission. He will be the little boy that he has a right to be.

Lori


A dog will come when called, a cat will take a message and get back to you later.

Sure thing Bones,

In July of '99 I started the NSD and had almost instant results. Last year I started to re-introduce starch into my diet with no harmful results. Today, I'm on a low starch diet which has become closer to a normal intake of starch than it is low starch. I am either cured or into my 3rd year of remission...I don't know or care which. This after fighting AS for almost 25 years.

If mine was the only NSD success story, I would hesitate to talk about it here but, happily, I'm only one of many.

Good luck,

Pete

Now thats what Im talking about!! I feel better already.Thanks and good luck. You're son is very lucky.
See Yah,
Bones
P.S. Has anyone else had success with Enbrel??????????

Edited by Bones on 04/22/02 09:46 PM (server time).

THe SUCCESS story already has begun for you. You found this place and you are not permanently bent over. Heck the fact that this place exists is a success.

I hate could've and would've but had KickAS been here when I was just getting diagnosed I believe I would be so much healthier. I also would have learned without all the wrong turns how much I need to keep my positive attitude day in and day out.

Anyway the SUCCESS is that if your Rheumy tells you as you say "you're screwed and hands you some Vicoden" we are here to tell you go get another Rheumy and that maybe you should try meicine X, Y or Z.

Hang in there and the good folks here will help anyway we can. I truly believe that and have experienced the help that this place extends.


stevec-they also serve who stand and wait

THe SUCCESS story already has begun for you. You found this place and you are not permanently bent over. Heck the fact that this place exists is a success.

I hate could've and would've but had KickAS been here when I was just getting diagnosed I believe I would be so much healthier. I also would have learned without all the wrong turns how much I need to keep my positive attitude day in and day out.

Anyway the SUCCESS is that if your Rheumy tells you as you say "you're screwed and hands you some Vicoden" we are here to tell you go get another Rheumy and that maybe you should try meicine X, Y or Z.

Hang in there and the good folks here will help anyway we can. I truly believe that and have experienced the help that this place extends.


stevec-they also serve who stand and wait

THe SUCCESS story already has begun for you. You found this place and you are not permanently bent over. Heck the fact that this place exists is a success.

I hate could've and would've but had KickAS been here when I was just getting diagnosed I believe I would be so much healthier. I also would have learned without all the wrong turns how much I need to keep my positive attitude day in and day out.

Anyway the SUCCESS is that if your Rheumy tells you as you say "you're screwed and hands you some Vicoden" we are here to tell you go get another Rheumy and that maybe you should try meicine X, Y or Z.

Hang in there and the good folks here will help anyway we can. I truly believe that and have experienced the help that this place extends.


stevec-they also serve who stand and wait

What's the matter Steve, you got the hiccups??:)

Pete

I just pm'd you about my Enbrel experience. I didn't know your age before I read this post. Since you're a young pup, you may want to check out the NSD, and do stretches, and exercise. If you can get your disease under control with exercise and fewer drugs, you're only doing your body a favor. All drugs have side effects, and some are rather nasty, and even life-threatening. My 78 year old uncle was completely fused at your age. His younger years were quite painful, but he took no drugs; and although he is bent, he still has his health.

If all you get from your doctor is a pat on the head, and a few pain pills, it's time to go doctor shopping. And learn all you can. With a disease like this, knowledge is power. Remember it is YOUR body, so take charge.

Hugs,

Cindy