Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Another Newbie here..

Hi,
I've just joined this site and I want to say how glad I am to find people that know what my father and I are going through! My father has a severe case of AS, and i have a mild case. He'll probably not join, he's been dealing with this since his 20's and he's now in his 50's, retired, and on disability. I come from a family that has been through ALOT. My father of course having AS, a brother who has OI (osteogenisis imperfecta) and a mother who lost her fight to cancer in 1993. My sister and i seemed to be the only two healthy ones, till i started to have the pains in my jaw, hips and knees in my teens. Of course i saw specialists, and they gave me naproxen for my pain, which helped, but the pain was always there. I was even tested for HLA B27 once, but it came up negative. It wasn't till i had iritis that they finally tested me positive for the gene. Even then i still had very little to go on, since i knew growing up my dad could not turn his head, or do many things, but they never told me why till about the time i tested positive. Having no health insurance, there's not much my rhuemy could do for me(though i lucked out with him! $25 visits, free samples, and free cortizone shots.) but i still didn't have much of an idea of what to expect. That was till i found this site. Just recently i had an extremely bad episode of inflammation in my back. Since i knew AS had to do with my back, and my dad's back was fused, i wanted to know everything i could on the disease. Thanks to this site, i have found out so much! I cannot begin to say how much this information has already helped. I've taken the advice and lowered the level of starch in my diet, which has considerably helped, i've been drinking 100% juice, and that's been a huge help, i've stopped drinking soda, and i notice a difference, i printed out the guidebook and had my fiance read it so he'd be able to understand what i'm going through, and he's already began to help me make a change in my diet. My flare ups have already reduced in the few days since i've found this site. And my posture is much nicer. I just want to say how happy i am to have found a page where there are so many people who understand the pain, frustration, depression, hopelessness that can all come from having this disease. this gives me hope and courage to face things that may come my way, cause i know i have a hard road ahead of me, but i'm not alone.
take care,
vicky

Vicky,

Welcome to the site!!!!!

I am sorry you and your family have had such a rough time with things.

We have alot of people here on the site, who care, are informed about many things and always willing to try to help when we can.

Any of our advice should never be mistaken for your Drs. advice or talking to him about a problem, but at least maybe we can help with some situations and try to keep your spirits up.

We have some people who almost have no symptoms of all, and then some who are wheelchair, or bed bound. Sometimes we all need encouragement.

I think you will really like it here.

Let us know what we can do to help, or if you just need to vent.

Lisa

Hi Vicky,

Glad you found us here at Kickas.

Good to hear you have had some positive results from the diet... maybe you can pick up some other pointers and really get AS on the run. Knowledge is power when living with AS, no better place to find it than here.

Take care,

Tim

Welcome welcome welcome! this place is a godsend for sure. I often disapear a lot and then come back and they all still are nice to me ;-)

Hi Vicky,

WELCOME

I'm also glad that you can have benefit of the diet as the diet help me as well. You are definitely not alone

Hugs,
Sinta

Vicki, Welcome to KA, you have already taken advantage of
the good things you can learn from this site. Happy you
have seen some results with reducing your starch.
Great people here.

Good Luck,

Maxine

Hi Vicky,

I'm sorry you've had such a hard time, but I'm glad you found this site! It sounds like we may have slightly similar situations...my father has experienced fairly severe AS for about the past 30 years, he has fusing in his neck and cannot turn it hardly at all. I'm 22 and so far I seem to have a milder case than he does, and the only thing that's been recommended for me is to take naproxen. Primarily its my hips, knees, and neck that bugs me. Anyhow, I hope that you find this site useful, I know I do!

Em

Welcome Vicky.....I'm glad you found KickAs.

Sherri

Hi Vicky and welcome to KA!

From the sounds of things, you've already discovered some of the perqs of this place. I hope you stick around to experience more fully the best part ... the people here are some of the most generous and amazing folk I've ever had the pleasure to know.

Hugs,

Em,
Yeah, that is pretty similar. My dad is pretty much fused from neck to hip, with his 3rd artificial hip in one side, and needing a 3rd replacement in the other. I started with just those problems in the knees and hips, but now a week from 24 yrs. of age my back is starting to act up. So take advantage of what you can while you can, and better yet, try that diet of low starch, it really does help. my dad and i were talking today and i told him how the low starch has helped me, and he was like "yeah, all that bread probably ain't good for me" Starch is a main ingredient in my family. If that naproxen doesn't work, you may want to try celebrex or mobic for the hips. i was on celebrex after naproxen, and that helped, then i went to vioxx, which they pulled of the market but that stuff helped me so much! so now i'm on mobic, which helps. right now i'm also on prednisone for my back. i take fish oil and CoQ10 for my feet, and that helps. But anyway, if you ever need to talk just give me a holler, i know the feeling of wanting to get a thing or two off your chest.
take care,
Vicky