Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Hi Im Tammy

Hi my name is Tammy, im new here. Im 20 and i have AS. Im really hoping that i can find some suppot and some people that i can talk to. My Doc. just told me that my back is already starting to fuse and im really scared. Dose anyone in here have there back fused or fusing? Also is anyone on Enbrel, and does it work for you?

hi,

Welcome to KickAS.

There's lots here in your situation , or have been through similar experiences, I'm sure there will be more along shortly esp to discuss enbrel.

I 've managed to stay unfused so far, more out of luck, or a low pain threshold which keeps me moving haha!

Getting the diagnosis is good in many respects, but it's a shock esp when you start reading too much. What I have found so good here is that you get the real stories and there are enough of us with similar disease patterns and drug reactions to be able to share information and advice. Many here are better informed than alot of the Dr.s that you pay alot to visit. that does not replace medical care but this disease has some funny affects and this disease is not that common.

Something you ought to consider is the No/Low starch diet, which helps a number of us and may actually slow things down. Trying that early on may really help.

I started quite young as well but discovered the foods in my diet quite by accident and that was the mainstay of my self help which did a good job from 1988 until 2000.

Do n't be afraid to ask questions, information is very useful and helps you in your condition.

David

Hi Tammy! Welcome. I'm 21 and this is a wonderful place. Glad you found it!!!!
Michelle

Hi Tammy and Welcome to KickAS,

It sounds like you are off to a quick start already having four vertebra fused at such a young ago. How are you doing on the Enbrel? I'm sure there are several here who can give you personal information of the effects Enbrel has had on them. Out of the whole group you can probably get information on about any drug the doctor might give you.

Here are a few links you can read when you have the chance they may answer some of your questions. http://www.medicinenet.com/ankylosing_spondylitis/article.htm This one list links for each state and has links for resources available for that state.
http://www.arthritis-symptom.com/states/

Once again welcome, we look forward to hearing more from you and helping you anyway we can. Have a great evening,
Brent

Hi Tammy4,

What happened to Tammy's 1, 2 and 3?

Glad you found us here at Kickas, this is a great site to learn about AS, ask questions, give/receive support and laugh now and again.

There is quite a bit you can consider in your treatment of AS. Diet, medications, exercises, supplements, yoga etc.... take the time to learn what is all out there, the more you know, the more you will benefit.

Hope you stick around. Take care,

Tim

If you get up one more time than you fall, you will make it through - Chinese Proverb

Hi Tammy!

Welcome to KickAS! If you're looking for "some suppot and some people that i can talk to" you've found the spot. I've been coming here since I was 21--I'm 24 now. I don't have any fusing at this point. Strangely enough, I did have an almost fused SI joint, but after taking sulfasalazine for 6 months it completely resolved itself. I moved and since the new doctors never saw it they don't even believe I have AS. There are a number of Enbrel users here, I'm sure you'll be hearing from them.

'Erie (-:

i have heard so much about diets for AS does anyone know about any of them? And do they really work?

Hi Tammy. I am age 54 and have had AS since age 18. I too was diagnosed early as my AS came too me with a vengeance. Over the last 36 years I have tried many diets eliminating certain food groups but to absolutely no avail. I am fused in the neck rib cage sacroiliac joints wrists finger ankles etc. etc. I am not one to give advice. But what I do is eat low fat well-balanced meals consisting mainly of fresh fruits and vegetables. I avoid processed foods and canned goods which are high in who knows what. If a product contains more than 125 mg. of sodium I give it to my dog whose name is Chelsea. charles

Hi Tammy...and WELCOME!!

I am on Enbrel and my spine is 100% fused. The Enbrel has been a new lease on life for me especially in my hips and shoulders. I hope you can things that work for you in gaining some control on this disease!

Alot of spectacular folks here at KA who between them all have gone through whatever comes down the line on the board.

Bob



Got an itch? Scratch it!! Scratchboard Art by R. Berendt

Hi Tammy,

The No Starch Diet (also known as London AS Diet) seems to be very effective in treating AS for some individuals such as myself. When I had to be taken off meds 2 1/2 yrs ago due to elevated livers, I looked for other options in treating my AS that I had had for 6-7 yrs at that time. I came across this website and learned about the No Starch Diet and I have not looked back since.

Basic premise of diet is that starch does not fully digest, it is leftover for bacteria (klebsiella bacteria) to eat and this bacteria mimics our HLA-B27 gene which leads to the problem of inflamation (since the bacteria enters bloodstream through intestinal walls, white blood cells attack and kill... but then become confused and also attack the gene).

They have a diet forum here at Kickas for those interested to learn more a little further down the Main Menu. Many dieters that do well with diet in that forum to ask questions if you care to ask them. Some use diet in conjunction with their medications, other strictly use diet to treat their AS.

All for now. Keep on Kicking!

Tim

If you get up one more time than you fall, you will make it through - Chinese Proverb