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Tricia #160415 05/10/04 11:55 PM
Joined: Jun 2003
Posts: 3,581
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Hiya,

Welcome to kickAs, learn as much as you can! It helps heaps.

The early days after diagnosis can be a rollercoaster of emotion. As for the prolonged delay it seems to be common.. Not many of the health workers understand this disease so do n't get disheartened at ignornace, find a team that understand and work well for your case.

David




Tricia #160416 05/11/04 12:22 AM
Joined: Mar 2004
Posts: 476
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Welcome to KA you will get loads of information here. Everyone is
very helpful.

Good Luck,

Maxine

"Mike's Mom"


"Mike's Mom"
Tricia #160417 05/11/04 12:55 AM
Joined: May 2003
Posts: 715
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to KICKAS.

I hope you find the information you need here on KICKAS, and there are plenty of helpful people to guide you to more information.

The great thing about this site is that people share experiences.

The rest of my post is my normal welcome information and is well worth a read.

You will find this site and the people on it very supportive, knowlegeable and experienced. One of the great aspects of the site is that people share experiences.

Have you been through the normal battering of tests, XRays, MRI, Catscan. Have you had a blood test done, HLA-B27 positive or negative, Rhuemtoid Factor, ESR and CRP readings.

Look around the site, there is a lot of useful information, the following are things you should look closely at.

The NSD No Starch Diet is well worth trying, many people here have had great success with the diet, some have managed to come off all medications on the diet. If the diet works for you, then that is got to be better than taking medications. Remember though that the diet does not work for all of us. If you are serious about trying the NSD, try starting with the 3 day Apple diet first, I think it is a system cleanesing/detox diet. As to the NSD, there are differing levels of the diet from strict NSD to LSD to Gluten Free. My suggestion is to try the strict NSD first and migrate down to the lower levels experimenting with various foods and there effects.
Here are some links. (just click on them)
AS Dietary Primer
AS Foods
No Starch Forum
No Starch

As far as medications, have a look at postings related to Enbrel/Remicade/Avara these are relatively new medications to treat AS, the downside is that these drugs are extremely expensive and you will need to check if you are covered. Many people have posted great success on these medications.
Check out the AS Pharmacy Forum
Medications

Myself, I think the answer lies in finding the right combination of Diet/Medication/Exercise that suits you, everyone is different.
There is a saying here "Use it or Fuse it", exercise is really important. Some suggestions are Yoga, Pilates, Tai Chi.
Hydrotherapy is also well worth trying.

One other thing, learn as much as you can, you may find your Doctors knowing very little about AS, and I suggest that you become proactive in your appointments, ie suggesting and discussing things that you find on this site with your Doctors.

Look around the site, there is a lot of useful information here.
If you have any questions, post them up and you will be surprised at the amount of responses.

Another thing to watch out for is Uveitis (a form of Iritis), which is common with AS.
UVEitis
If you get this see an eye specialist immediately, as permenant eye can occur if not treated.

The following link's are some light reading on AS.
AS Information 1
AS Information 2
This link also descibes the link between IBD (GI) and AS.
AS Information 3
AS Information 4

Also if you go back to the main page KICKAS Main Page you will find the following sections with great reading information.
Medical Center
Diet Center
These sections are well worth reading.

Also if you need a good laugh there is the Jokes Forum
Humor

Sorry for all the reading material.
Take Care
Wayne





Tricia #160418 05/11/04 01:30 AM
Joined: Sep 2001
Posts: 6,391
Likes: 1
Addicted_to_AS_Kickin
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Hey Tricia

Welcome to Kick AS. The best support site you will find.

Hopefully you will find all the answers you are looking for, with a few friendships thrown in for good measure.

Lori






"You will find as you look back upon your life that the moments when you have truly lived are the moments when you have done things in the spirit of love........."



Tricia #160419 05/11/04 02:07 AM
Joined: Mar 2002
Posts: 1,413
Silver_AS_Kicker
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Posts: 1,413
..Tricia...there's plenty of info on thiis site and caring people too !....take care

Hope "Learn from yesterday, live for today, hope for tomorrow."
."


Tricia #160420 05/11/04 02:44 AM
Joined: Apr 2002
Posts: 1,358
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Bronze_AS_Kicker
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Joined: Apr 2002
Posts: 1,358
Welcome Tricia to the KickAS family.
Bradford

To the world you may be one person,but,to one person you may be the world.


To the world you may be one person,but,to one person you may be the world.
Tricia #160421 05/11/04 03:09 AM
Joined: Sep 2001
Posts: 6,248
Likes: 5
Addicted_to_AS_Kickin
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Hello and WELCOME.

Sorry to hear you have AS glad to see at least you found this place and have a diagnosis. THe inital shock of learning you have AS can be a bit much but lots of good info and people here.

 
stevec-they also serve who stand and wait




L-R: Julianna, Jamie, Diane and Tonimarie

stevec-they also serve who stand and wait
Dotyisle #160422 05/11/04 03:26 AM
Joined: May 2004
Posts: 23
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Thanks for the warm welcome! I am so glad I found this site. I am sure I will learn a lot and also be able to share my pain with those who understand and might have suggestions on how to manage. Thanks! :)
http://www.pugminirex.com/


Jeremy #160423 05/11/04 03:29 AM
Joined: May 2004
Posts: 23
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Tricia Offline OP
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I am sure finding that more people seem to have this brought on by some sort of trauma. I know I had a twisted pelvis after the accident, but I had no idea that shortly after the real pain would start... My pain is all over now. Seem every joint in my body feels pain on really bad days. Feet,knees, shoulder you name it. Man and oh man the muscle twitching is about driving me mad! I have had a few suggestions on that as well. Thanks for the welcome! Look forward to talking to you more. Trish~
http://www.pugminirex.com/


Inanna #160424 05/11/04 03:31 AM
Joined: May 2004
Posts: 23
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Tricia Offline OP
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I hear ya! I tell you I have had my fill of doctors,and it is soooo scary... I can sure see how this forum could be adictive, we all need a lift and to be able to vent,and be understood. I am thanking God there is such a place!!! Nice to meet you.
http://www.pugminirex.com/


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