#26313 - 01/10/06 10:00 AM
AS info: some thoughts
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Mary Beth
Registered Visitor
Registered: 04/14/05
Posts: 1444
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I've been thinking a lot about AS, and length of time til diagnosis, and all the weird sypmtoms we deal with. And I've been comparing it in my mind to MS (which I know is worse, in that it is often crippling and often fatal). But what the two have in common is that both are auto-immune disease with a whole host of seemingly unrelated symptoms, but MS seems to be much more understood by the general public.
And I've been thinking that part of the problem might be that AS is most often described in terms of what I would call "classic AS": that is, AS that starts with back pain (or more rarely with peripheral joint problems), and goes through flares and remissions, and gradually over many years can cause serious problems.
But that is only one presentation type. Not all of us have flares and remissions. Some of us had rapid and severe onset that never let up, and was rather quickly degenerative.
And that got me thinking about MS again, because most people know there are different types of MS: there is the recurring/remitting kind, and then chronic degenerative. And the info about one does not apply very well to the other. They are so different they are almost different diseases.
And you know, that's a lot like AS. From the time I became symptomatic, I never had a single day where I felt good (til Enbrel came along). And some other people here have mentioned that as well.
I wonder if SAA would consider reorganizing their data to reflect the differences? There are people here who were fully fused by the time they were 30. That is not a long-term disease outlook for those people; it happened fast. Then there are those who have decades of weird sypmtoms that come and go before they finally get diagnosed.
Perhaps the disease info should better reflect the huge range in severity and speed of onset with this disease? I.E., perhaps the symptoms could actually be regrouped into distinct categories: "flaring/ remitting AS" and "severe sudden onset AS".
I'm wondering what other people think.
MB
_________________________
 "You must be the change you wish to see in the world." --Gandhi
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#26314 - 01/10/06 10:04 AM
Re: AS info: some thoughts
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mariposa
Registered Visitor
Registered: 11/08/05
Posts: 1867
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I think this is a great idea. I wonder of SAA can categorize the disease like that without the support of the medical community, most of whom don't recognize the different presentations of AS.
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#26315 - 01/10/06 10:09 AM
Re: AS info: some thoughts
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Mary Beth
Registered Visitor
Registered: 04/14/05
Posts: 1444
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Originally posted by mouse:
I think this is a great idea. I wonder of SAA can categorize the disease like that without the support of the medical community, most of whom don't recognize the different presentations of AS.
Have any of you been approached and asked for a list of all your symptoms, for research/ organization purposes, so the medical community can understand what people actually feel instead of what the literature says we feel?
I think probably not.
_________________________
"You must be the change you wish to see in the world." --Gandhi
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#26316 - 01/10/06 10:16 AM
Re: AS info: some thoughts
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Mary Beth
Registered Visitor
Registered: 04/14/05
Posts: 1444
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This is from this very website:
Almost all cases of AS are characterized by acute, painful episodes (also known as "flares") followed by temporary periods of remission where symptoms subside.
And I will say: "But the research/doctors/literature did not ask how it was for me. If no one is asking, how will they know?"
And so we go, round and round.
It's discouraging.
_________________________
"You must be the change you wish to see in the world." --Gandhi
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#26317 - 01/10/06 10:25 AM
Re: AS info: some thoughts
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earfilm
Member
Registered: 12/24/05
Posts: 310
Loc: Washington state
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I think that is a long term benefit of this website as a study of AS. Though it will take much longer to gain recognition of medical publishers, doctors, educators etc.
I'm very lucky that i fit the general descriptions of AS on this website and most information about it, and I still have had many problems with doctors and diagnosis.
Probably because of my genepool being historically highbrow, and being male, relatively intelligent and in and out of the workforce...over the past century i'm the type that would have been studied the most.
Though, I'm suddenly a little unclear on the distinction between Rhuematoid Arthritis and Ankylosing Spondylitis. I thought AS was a form of RA?
Thanks..Erik
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#26318 - 01/10/06 10:35 AM
Re: AS info: some thoughts
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Chris Miller
SAA Design & Web Coordinator & Forum Administrator
Registered Visitor
Registered: 02/27/04
Posts: 3114
Loc: Sherman Oaks, CA
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Hello,
Which is one reason we are adding your views/quotes - as mentioned in my early post today  Although the information on the AS pages is vetted by the Medical Board, we acknowledge unique and individual cases, and this is a perfect way to post that information for others.
Mary Beth, I'd like to use your quote on the AS main page please:
Originally posted by Mary Beth:
But that is only one presentation type. Not all of us have flares and remissions. Some of us had rapid and severe onset that never let up, and was rather quickly degenerative.
Thanks,
Chris
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#26319 - 01/10/06 10:36 AM
Re: AS info: some thoughts
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Cookie
Registered Visitor
Registered: 08/09/04
Posts: 1070
Loc: Boise, ID
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If the broader question is, "How do we educate the public about AS?", then I'm not sure debating the symptoms is the whole answer.
When I tell people about my AS and describe it as a form of arthritis, I see their brains shutdown. After all, 'everybody knows' that arthritis is something that happens to old people and it is a normal part of aging. Ugh!
No, no, no! THIS arthritis - and many forms of arthritis - is a disease of inflammation. The message just isn't getting through as to how serious chronic, systematic inflammation can be. This follows along with the symptoms-issue. AS isn't just about our spines fusing. AS includes chronic inflammation in all of our body systems: eyes, heart, kidneys, muscles, etc.
When I was a young teenager I was visiting my older, married sister's house. Sister and her husband had a friend dropping by. Sister warned me that he had just been diagnosed with a serious form of arthritis, he was in a lot of pain, and I shouldn't make any commits about it to him. As soon as the friend walked in the door, I KNEW how he was feeling. I immediately had a strange empathy for him and I never understood why until some 30 years later when I was diagnosed with AS.
Back in my 20's, I was trying to figure out why I was having problems with my fingers suddenly swelling into 'sausages'. One of the doctors I was seeing at the time (I didn't have good health coverage then so I didn't get to see the same doctor twice) said, "You probably have some form of arthritis." He did a brief exam on my back and told me it looked like I had arthritis in my neck, too. BUT THAT WAS IT! The diagnosis was never pursued and I was sent on my way!
From that point on I'd fill out those new patient forms and check 'yes' when it asked if I was ever diagnosed with arthritis but nothing ever came of it. I don't remember any doctor even asking me about the fact that a 30-yr old woman was diagnosed with arthritis. Eventually, I just stopped checking that box. Then WHAM!, in completely unrelated circumstances I was diagnosed with Reactive Arthritis and finally with AS.
All I can hope is that with the advent of newer drugs to treat chronic conditions like immunity defects and chronic inflammation (which is now thought to be a leading cause of heart attacks), AS will be ONE OF the diseases getting more attention. One can hope.
_________________________
 Diagnosed May, 2004 with undifferentiate spondy. Now have AS diagnosis. HLA-B27 negative female with no family history of spondy. Taking Mobic and Cymbalta. Discontinued Enbrel, Oct 2005.
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#26320 - 01/10/06 10:39 AM
Re: AS info: some thoughts
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Mary Beth
Registered Visitor
Registered: 04/14/05
Posts: 1444
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Erik,
AS and RA are both forms of rheumatic (inflammatory) arthritis. But they are distinct diseases, with distinct joints being affected. RA more typically attacks the small joints of the hands and feet, as well as knees. It also is more likely than AS to have other organ involvement.
As for symptoms of AS, SAA has listened where they could, and has made changes. When I first came here, nothing here described me. My primary symptom was a sudden and severe stiff neck. I also had very bad muscle spasms. It turns out this is a common symptom of AS, but for some bizarre reason you do not often see it listed in the symptoms charts.
So yes things will improve. It just makes me feel better to feel like I'm fighting to make things better for the next generation coming up. I hope that within 10 years, the disease will be as well known and well recognized, in all its variations, as MS is now.
_________________________
"You must be the change you wish to see in the world." --Gandhi
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#26321 - 01/10/06 10:54 AM
Re: AS info: some thoughts
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earfilm
Member
Registered: 12/24/05
Posts: 310
Loc: Washington state
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Good Job Mary Beth and Chris Miller.
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#26322 - 01/10/06 10:59 AM
Re: AS info: some thoughts
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Mary Beth
Registered Visitor
Registered: 04/14/05
Posts: 1444
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Originally posted by Chris Miller: Hello,
Which is one reason we are adding your views/quotes - as mentioned in my early post today Although the information on the AS pages is vetted by the Medical Board, we acknowledge unique and individual cases, and this is a perfect way to post that information for others.
Mary Beth, I'd like to use your quote on the AS main page please:
Originally posted by Mary Beth:
But that is only one presentation type. Not all of us have flares and remissions. Some of us had rapid and severe onset that never let up, and was rather quickly degenerative.
Thanks,
Chris
_________________________
"You must be the change you wish to see in the world." --Gandhi
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