New member - Kickas.org

Kickas.org

Hello all,
No one has said AS, but all indication sure point to it . For the longest time I have sought an answer to what is going on with these joints. I've had surgeries on my knees and on my spine . . . and i've been told ;;
degenerative arthritis
fibromyalgia
degenerative scoliosis
degenerative spine
And the one at present is seronegative spondyloarthropathy
I am HLA B-27 positive
Do you think I'm in the right place joining KickAS? And have others received these diagnoses before getting here?
Peace,
Barbara

Knowledge emerges more readily from error than confusion -- Bacon

Hi Barbara

WELCOME to KA. I was told the same as you fibromyalgia, seronegative spondyloarthropathy and after many surgeries I was told that AS is grouped in with the seronegative spondyloarthropathy and there for I have AS. Not to mention the way I am fused and bent.

John

Hi Barbara

First welcome to KickAS, you've come to the right place. The folks here are amazing and offer free advice and allot of support. Its great to have others that know what your going through and in most cases there's someone who’s has been down the road that you’re on right now.
Over the years I was diagnoses with allot of what you listed and some others that you haven’t!. But finally in Dec of 2002 someone got it right!. I've had AS for years (sense I was 15 or so) I'm now 38. So I spent allot of time going from one Doc to another, test after test, with no real answers.
The best thing that I did was finding this site, I’ve learned soooo much over the last year its amazing. There are others here that don’t have AS (but most do) so by all means even if your not sure at this point, stay with us, ask questions and make some great new friends. Wish you all the best and look forward to getting to know you.
Take care

Keep on Kicking

Martin

"Trying to fly on broken wings"

Barbara, you sure are in the right place!!! No doubt about it.... so... WELCOME TO THE FAMILY!!

You will find that all of us here have differing dx's, a cocktail of all the spondyloarthies..... (jeez, did I even spell that right???

)

I look forward to chatting with you soon. You might want to email the administrators and get accessibilty to the woman's forum too. We talk about a lot of other stuff in there that we don't feel comfortable posting out here..... like beer and sports... (whoops... there I go, letting Tim know what we talk about!

)

Again, Welcome!!!

Maxine

May the roof above us never fall in, and the many friends gathered below it never fall out.

Barbara, you are not alone in multiple diagnoses. Many here have had that experience, and some are still trying to get diagnosed with anything - let alone AS.

That said, WELCOME TO KA!!

I hope you benefit as much as the rest of us have. Just beware, it's an addictive place and you may soon find that you can't go through even one day without us, without going through withdrawal.

Hugs,

Kat

"I haven't failed. I've just found 10,000 ways that don't work."- Thomas Edison

Hi Barbara:

Good for you - you've come to the right place. And you are definitely not alone in having a whole bunch of different diagnoses plopped on you before you land up with AS. At first, I was diagnosed with lupus and lived with that and all the tests (like a kidney biopsy - yuck!!) and drugs - I just got worse. After that, let's see...it was poly-arthritis, followed by undifferentiated inflammatory arthritis, and after a whole lots of years, AS.

So, just shows that you have to keep at it and eventually, someone'll get it right!! Glad that you're here...keep on posting!!
Catherine

Hi Barbara!

Welcome!

YES, I was dx in May of 2001 and right afterwards found KickAS.

I have a dx of Spondyloarthropathy, lumbar spondylosis, dextroscoliosis, a bulging disc, osteo a bit in the thoracic, TMJ and I'm sure more I forgot.

Oh yes, +HLAB27, +ANA.

Take care! You'll find this place to be of great support and information!

Adios!
Buggie

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?)

I did it backwards. I was diagnosed with spinal arthritis of my cervical spine back in the early 1980's. The medical term they used was cervical spondylitis, I think, (I'd have to go look) Anyway, I cruised along with my obscure disease and its assorted obscure problems under the same insurance and doctors for about 15 years, until my husband changed jobs and we moved in the late 1990's. I've done years and years of physical therapy to regain and maintain use of my arms and neck, I've used and crashed off of ant- inflamatories, I am allergic to muscle relaxants, I have had repeated kidney and bladder infections, and my eyes are extremely sensitive to bright light, glare, and haze. Oh, and I don't know what it's like not to have your lower back not hurt, your sciatic nerve down your back of the leg to be on fire, and I've got nerve damage in my arms and legs. You can stick a pin in some areas and I won't feel it. My toes look funny. But since my disease was laid on a fairly active person to begin with, I do the diet and exercise maintenance routine. But a few years ago I had a very bad flare, where I was loosing use of my right leg, so I tried getting my problem treated medically...what a joke.

Since then, I've had the unique experience of having every idiot I've seen try to undiagnose me based solely on my healthy physical appearance. They don't listen, they won't do the diagnostic scans without a fight, and they get very arrogant with me when I correct them. Here's my list:

Fibromyalgia
Multiple Sclerosis
No arthritis at all
Normal for your Age
Just osteo arthritis
Tendonitis
All In Your Head, (bored, just seeking drugs, need to exercise and diet more (yeah, sure...)

Then we changed insurance, back to square one, same story, another year goes by, more doctors. I would tell you what happened at the last doctor's appointment, but I don't know if anyone would believe me, because I finally had that MRI scan report in my fingers proving what I had all along and I was not being "nice" or "patient" anymore, and that doctor looked at me and said, "I just don't see anything here that would be causing you any physical pain...." and then she basically ended the appointment. The report detailed the spinal cord compression at various areas,(blown discs and spinal canal narrowing, bone spurs, that sort of junk in the neck) the technician that took the scan told me I needed to get a new doctor, but I went back one last time because I wanted to make her look at me and tell me something like that, I think when doctors behave that badly that patients have some sort of obligation to try to let them know about it.

Went back to the family doctor, got another round of antibiotics, finally nailed whatever it was, starting coming out of the flare. Thank God I at least start peeing blood once in a while and they like that, I mean, they like to see something like that when you are sick because that's pretty obvious and easy to treat. I don't know if I've converted him yet to the concept of "giving her antibiotics makes her kidneys AND her spine better" but I will gently reintroduce the idea some time.

I've worked my [####] off the past year and a half doing my own routine and I sort of have the leg back, I just can't feel my foot very well. I just don't think it should take two years to get an MRI in the United States if you supposedly have good insurance, and I am so disgusted at the "rumor-tologists" I saw during this time I don't trust myself to make an appointment with another, there are almost no drugs I can take anyway and I can't deal with someone who tells me I don't have pain. I don't think I'm a good candidate for the biologics because of my history, but thanks to this site, at least I don't think I have gone completely off the deep end...I just accidently had a good doctor when I started.

If you are stiff in the mornings but better by afternoons, and you have iritis or problems with glare and hazy vision, and it all started with heel pain many, many moons ago, you've got the right page on your screen.

Edited by cheerful on 06/14/04 07:35 PM (server time).

Hi Barbara,

I think you found the right place here at Kickas. In regards to diagnosis a few items to consider that are some times used in diagnosing AS.

- Family history - Any other family members with similar syptoms or even possibly diagnosed with AS?
- ESR test - most, but not all ASer's will show elevated ESR (active inflamation test). I actually do not show elevated levels despite real bad inflamation at times
- Stiffness early in morning that gradually improves throughout the day
- X-ray evidence of "fusion"

You did state that you were HLA-b27 positive... this is a good indication you may have AS. Your symptoms sound familiar.

Hope you like it here at Kickas, a lot to learn here in learning to live with AS or other chronic conditions.

Take care,

Tim

Hope is only a post away with KickAS.

Welcome to KA Barbara!
Like everyone already said...you have come to the right place! If you hurt, you belong here.
Even if you don't have a diagnosis of AS, what they have said so far that you have is treated basically the same as AS...if that helps any.
Hope you like it here and you stick around.

Hugs,
Lisa

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

Especially for:

In reply to:
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?)

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"