Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New member

Wow Wind_Rider -- post of the year surely!!!

Especially for:

In reply to:

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Are you ever in the right place. Welcome to the Land of the Lost. Hop on over to the no starch side side and visit sometime, we have the Wheatless Band of Brothers and the Celtic Circle of the Fruit Sisters ready to try to help anyone who wants to avoid gluing their intestines with Gluten, which helps some of us. When I read the NSD side of Kickas, I knew I had found my people. (WARNING, THIS IS A JOKE, DO NOT YELL AT ME FOR BEING UN-PC, IT IS A JOKE, OKAY? I have fair skin and light reddish hair, you know I don't eat starch, a JOKE, okay?)

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Which I am still crying laughing from bwwahahahahahaha!!!

From a Celtic Circle of Fruit Sister,

Take care,

Jan

(Btw Barbara, welcome to KA, I'll tell you about my "reverse dx" sometime whenever I stop laughing long enough to type properly!!!)

Women and cats will do as they please and men and dogs should relax and get used to the idea

- Robert A. Heinlein

Edited by cheerful on 06/14/04 07:36 PM (server time).

to KICKAS.

The other strong indicators of AS are
- Family History (they believe it is genetic)
- Elevated ESR and CRP - Blood Test

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

Hi Barbara, Welcome to KAS, you will find it very informative here, friendly people.
Soon you will feel at home.

I am confident you will get all of your answers about AS right here.

Good Luck,

Maxine

"Mike's Mom"

Barbara,

Welcome to KickAS, previous diagnosis's sound familar! Too often many of us have been banging on Dr.s doors for along time, before the underlying problem is recognised.

There are various bodies around the World trying to address this problem within the medical fraternitiy, overcoming some older outdated ideas.

Spondyloarhtropathy is the family that AS belongs to, AS has the worst prognosis and the one that is best understood.

The SpA members are Psoriasis Arthritis, Enteric (Inflammatory Bowel Disease) Arthritis, Reactive Arthritis, and Primary AS. Another undifferentiated SpA or AS which was added for some that did not meet the full criteria but obviously had something that closely resembled AS/SpA. Usually one hip is affected rather than both. The Ankylosing is when a build of bone occurs in the soft tissues and in the jonts and eventually movement is lost.

In some the SpA 's can progress to AS or something which resembles AS. Most people with SpA do not go that far, but have a nasty painful debilitaing condition. One of the main differences in the diagnosis between SpA/AS are specific changes on Xrays or imaging. But everyone recognises that it is better to prevent thses changes from occuring or progressing.

SpA/As can affect be either Axial (Spine Hip) Peripheral (Knees ankles feet and hands). Elbows seem to get mentioned a bit less, I'm not sure if shoulders are axial or peripheral. Ribs can be very painful and are to be watched.

Another buzz word is Enthescopathy or enthesitis, inflammation of the site that a tendon or ligament achors onto the bone (insertions) and a build up of bone. Sometimes called bone spurs these are common on the knees where the tendon from the bottom of the knee cap joins the bone and the bottom of the achilles joins the heel.

There are things that can occur with this condition and it's associates. None of them to be taken lightly, especially the eyes, this is one of the many great aspects of this board as the accumulated experience awesome.

I wish you to be very well and soon!

David

But Jan,

From a Celtic Circle of Fruit Sister - as in fruitcase or fruity?

On a clear night under a full moon practising your craft - both?!!


. . . . . . . . . . . . . Friend hast thou none;
For thine own bowels which do call thee sire,
The mere effusion of thy proper loins,
Do curse the gout, serpigo, and the rheum
For ending thee no sooner. (MM)

Errr, let me get this right?

Bilko the *Witless Brother* amongst the Wheatless Band of Brothers is calling ME a fruit bat???

The words "kettle", "pot" and "black" are springing to mind here honey pie

Btw, the only thing I am partial to doing under a full moon is lying in the garden doing a spot of moon bathing - a vastly underrated activity. Try it sometime - a nice glass of wine and some good company always enhances the experience (am hoping I'm not setting myself up for future abuse by advising you that )

Take care,

Jan

Women and cats will do as they please and men and dogs should relax and get used to the idea

- Robert A. Heinlein

Hi Jan
Don't whatever you do, encourage any of them. "Give them an inch"?
Love
Sue

On the contrary, you rather hoist me up for self abuse there ...



. . . . . . . . . . . . . Friend hast thou none;
For thine own bowels which do call thee sire,
The mere effusion of thy proper loins,
Do curse the gout, serpigo, and the rheum
For ending thee no sooner. (MM)

Thank you, thank you, thank you. What a wonderful warm welcome I have received. I spent the day going into NYC to see my rheumatologist . . . I told her about this list. She says she's still not ready to say it's AS because I don't have the fusing stuff, but the Spa is now in my hands and elbows and AARGH!!! But, she said the crocheting and knitting I do will help keep the fingers flexible. I told her about the Use it or Fuse it Slogan from here and how educational and wonderful this site is.

So, I have a lot of reading to do, some diet stuff to try and fingers, knees, and back to keep moving.

Thanks again,
Peace,
Barbara

Knowledge emerges more readily from error than confusion -- Bacon

Hi Barbara, Welcome to KAS, I see you have your questions already answered,
and that is the way here someone jumps on board right away to help you.


Best of Luck

Maxine


"Mike's Mom"