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Archive 1Archive 2

My Story

I was diagnosed with AS when I when 10 at Children's Hospital in Little Rock, Arkansas. I am a woman, by the way. It started after the first softball practice that spring, my papa had to carry me in the house. My ankles swelled up and I couldn't move them. Anyway, it moved to my knees then my lower back. My hips and shoulders are slowly joining the party, too. They told me to take 3 ibuprofen, 3 times a day. Well, that made my stomach hurt. I only took 2 when I hurt. Then when I was 15, they tried vioxx, which was too expensive and didn't work so I quit that too. You've all seen the commercials, I'm sure. I haven't had x-rays or any treatment other than over-the-counter naproxen and hard work in almost 10 years. I also had two pregnancies, and my back felt better while I was pregnant (until about the 8th month). Now, I'm 23 and my back has gone out twice in the past year. I have a 6 year old and a 1 year old (boys) and it hurts to play with them after work. I just pray I didn't pass it on to them. I just live one day at a time. Oh, and stretch, ALOT!


Cecilia

P.S. Don't trust pharmaceuticals. Take as little naproxen as possible. Also, seriously, marijuana helps. Just saying. —Preceding unsigned comment added by Cecilia rhea (talk • contribs) 18:38, 18 July 2009 (UTC)


Gender differences

I've been reading up on this and the consensus among rheumatologists seems pretty clear that women and men are not affected equally. Comparison of x-rays found that men had greater spinal damage than women ref. Also the symptoms were different: men had more spinal involvement, women had more peripheral involvement. Women and men showed a similar level of disability which is surprising given that the level of spinal damage was not the same. This will of course lead people to think that the women are winging more, however x-rays are very poor at determining the level of inflammation. It may be that women who have the disease are experiencing just as much or even more inflammation and yet not experiencing the same level of spinal damage.

This study ref says nothing about whether men and women have the same likelihood of having A.S.

Related articles:

mr.z [05:55, 24 June 2007 (UTC)

It should also be noted that women are a lot less likely to be diagnosed with AS, due to the disease being confused with other ailments in female sufferers. Dollarwizard (talk) 16:39, 8 December 2009 (UTC)

Another Famous Ankyloser

I've read a number of places that Ed Sullivan (Famous American TV Talk Show Host 1901-1974) suffered from the disease - his posture and the way he held his neck would support that.

Was he famous for having AS? Otherwise it may not be a worthwhile addition. Was he as famous for having AS as Michael J Fox is for having Parkinson's? JFW | T@lk 22:13, 29 September 2005 (UTC)

I can appreciate putting Norman Cousins in the list of sufferers since he wrote a famous book with his illness as the focus. However, I wonder if he wasn't misdiagnosed. He became "cured," though there is no known cure for AS. His spine never "ankylosed." All in all, a top of the head diagnosis which doesn't stand up too well under the scrutiny of time. Student7 22:45, 11 January 2007 (UTC)


Jay Chou who is also a well known Asian pop-icon is diagnosed with AS. Thus causing him to perform badly in his dancing skills. —Preceding unsigned comment added by 75.168.239.177 (talk) 07:25, 19 February 2009 (UTC)

Removed Content

I have been reviewing the history of this page and I am at a loss trying to understand why some quite informative hyperlinks have been removed? I see numerous modifications saying "Reverted edits by xyz" without giving a REASON for removing what for all the world look like good contributions. So far I have only one "reverted edit" that I could see had a clear reason..

I found some useful links in the page history and I can't fathom the reason why they were removed, for example:

Wikipedia is cursed with a lot of self-appointed guardians who are creating a huge net effect of discouraging new editors from coming in. You put in some new content in an article, and one of these self-appointed guardians finds some obscure rule that your content violated, and bammo! Content removed. 207.225.20.43 (talk) 15:19, 13 December 2009 (UTC)

Iritis information needs to be added to the article.

The section on prognosis lists many complications of AS yet for some reason there is no mention of Iritis or Uveitis (inflammation of the eye) that is the most common co-morbid condition affecting people with Ankylosing Spondylitis. Up to 40% of Ankylosing Spondylitis will have at least one bout of Iritis during their lifetime and many of those will have repeat attacks.Information on that here:ref This complication is very serious and left untreated can lead to cataracts, glaucoma and even blindness. I am newly registered with wikipedia so am wary to edit the article itself. One2four (talk) 14:28, 13 March 2009 (UTC)

Alternative therapy

According to my consultant exercise is not an alternative therapy. Exercise is essential with Ankylosing Spondylitis. ALL experts recommend exercise combined with NSAIDs or anti-TNF medications. If you don't exercise the spinal fusion will be far worse - period. Putting exercise under the Alternative Therapy heading is misleading and potentially dangerous because it is not an alternative. The current article (21/12/2005, 12:35BST) suggests that exercise is an Alternative Therapy. That undermines the entire entry because it is such a basic thing to get wrong, and is even contradicted by the information referenced by the links.

...response from yb... Not everyone will define 'alternative therapy' the same way. Right or wrong some will consider almost anything that isn't drug therapy as alternative therapy.

Your point seems well supported in reputable sources, so I have added some outline levels in the article to clarify the issue. Don't be afraid to Wikipedia:Be bold in updating pages in the future, though. --Arcadian 01:34, 11 January 2006 (UTC)


Treatment using Niacinamide.

When I was diagnosed with AS 23 years ago, I was devastated. I was only 46 years old at the time, and felt angry that such a debilitating disease was my fate. When my doctor told me that there was no cure, and I “Better go shopping for a good wheel chair” it only increased my anger. At that time I was unable to sleep in a bed as the pain was unbearable. I managed to catch some sleep sitting alone in a chair in the dark and silent home. During these lonely hours I directed my anger into a mental fight for my life. I managed to visualize myself as the leader of an army of white blood cells fighting the evil black enemy in my body. Later I learned that I had stumbled upon a mind-body therapy called Imagery, Ref.[1]. The stress was a cause of the breakup of my 25-year old marriage a few years later. I can not explain how or why, but I slowly seemed to get better. My theory is, that I refused to adapt the defeatist attitude of my doctor, and kept fighting both mentally and physically to improve my condition. I was told that exercise was either recommended or not! I decided to act, and started to do exercises that might hopefully allow me to enjoy soccer, tennis, golf, etc. which used to be an important part of my life. The movie “Anatomy of a Disease” based upon the book by Norman Cousins gave me further inspiration. I became interested in alternative medicine (as conventional medicine had no answers), and was further encouraged by the reading of Dr. Andrew Weil's book, Ref.[2], which have many examples of healing caused by life changes. I fell in love with a woman again. A few years later I discovered the health benefits of cracked flax seed, which I have diligently maintained until this date. My condition kept on improving, I could sleep in a bed without pain, I regained mobility of my joints, and I had only 1 or 2 “episodes” per year when pain returned to various parts of my frame. The “episodes” only lasted for 1-2 weeks. I am now 69 years old, still playing tennis and golf, and in good health (otherwise). I still have AS, I still do my exercises, and I have included a regimen of healthy food choices. But, maybe most importantly, I have discovered a possible treatment for AS by adopting the recommendation by Dr. Wilhelm Kaufmann (German, diseased), who suggested niacinamide for the treatment of arthritis. I take 1-2 g of niacinamide daily to fend off the inflammation, and it appears to work.

For people who wish to know more about this treatment, I refer you to: http://www.doctoryourself.com/news/v2n13.txt http://www.wellbodybook.com/004.htm

References. Ref.[1]: Harris Dienstfrey, “Where the Mind meets the Body”, 1991, HarperCollins. Ref.[2]: Andrew Weil, M.D., “Spontaneous Healing”

74.13.85.236 (talk) 20:46, 1 July 2008 (UTC)JKL74.13.85.236 (talk) 20:46, 1 July 2008 (UTC)

Exclude impact exercise

Any sport that involves impact will have (especially in an active phase of the disease) almost immediate effects. I'm writing this as "jogging" is mentioned, and it can have a very high impact on all the AS affected joints, it probably shouldn't be recommended?

You can remove it, as long as you provide an adequate reference that a) impact exercise is not recommended and b) jogging counts as an impact exercise. I found a lot of articles about exercise but couldn't get to most full-text versions. Nothing mentioned impact sports or jogging in the abstracts. A search of the web found a lot of replication of this article and one other. I did find several sites which recommended jogging as long as it is not painful. I do not personally know of any proscription against jogging (and I've been seeing a lot of kids with spondyloarthritis recently!), so I wouldn't remove it myself! InvictaHOG 12:52, 11 August 2006 (UTC)
Just my two cents. I suffer from AS. My doctor also told me to not engage in any impact exercises if possible (I play basketball). She would allow jogging if it doesn't hurt but prefers I wouldn't. I tried light jogging and it didn't hurt while I was doing it. But the next morning I couldn't get up at all... ugh! Of course the disease has progressed untreated for a number of years already. I tried Pilates and I think it's better than swimming because it also strengthened my core muscles and was able to do more activities despite the pain.

Responsiblebum 07:54, 15 December 2006 (UTC)

There is the advice in the article that All physical therapies must be approved in advance by a rheumatologist, since movements that normally have great benefits on one's health, may harm a patient with AS. Yes, jogging isn't great I know in first person, swimming is perfect since it envolves movements in a low-gravity environment. But AS is very complicated, all movements may improve or harm depending on how much of your spine is sealed, on how much your ankles are affected, and so on. In my opinion, an advice is sufficient. Sensei 09:47, 15 December 2006 (UTC)
I realize that this is merely "anectodal," but to confirm the above, I have been through quite a few tests recently in order to discover that my severe headaches were caused by herniated neck discs, most likely caused by jogging. I am 70 and had AS diagnosed some 20 years ago. I now use the cross-trainer and elevated treadmill to attain aerobic heartrates. On the plus side, my therapist pointed out that a usual surgical cure for herniation was fusion which I am getting "for free" from the AS! :) Student7 22:17, 11 January 2007 (UTC)
Add me to the anecdotal "rheumy said no jogging" chorus. Especially in my case, where my AS started in my hips/lower spine, jogging is #1 on the "Do not do under penalty of excruciating pain" list. Scarletsmith (talk) 12:59, 18 May 2008 (UTC)
I agree, jogging might cause serious problems especially for those that have fused. Two forms of exercise are recommended for the disease, swimming or other "low impact" (running is a high impact sport.) exercise regimes and "range of motion exercises" to assist the joint sustain full movement. Range of motion exercises are similar to the stretching and bending exercises found in yoga. Heavy lifting also is ill advised. Vigorous, fast paced exercise also appears somewhat helpful. A physical therapist should be consulted regarding any exercise practices for those with AS. "Occupational therapists" should be consulted regarding on the job activities. Exercise is a two edged sword for those with advanced, long term AS, some being good, too much leading to possible "flares [1]" in the disease, possible damage to joints and the onset of fatigue. It is very important that those with AS realize that exercise is not a cure all for AS and is perhaps over rated within the medical and AS community.. A balanced active life it helpful. Spinal fractures and muscle atrophy (including the heart) are serious concerns for those with debilitating forms of the disease and should be avoided if possible.
It is also important that those with AS maintain a good posture (neutral spine) at all times, seemingly, especial while sleeping and is perhaps under rated by the medical and AS community.
I have it bad. The Juggernaut of AS still marches on within me after 30 years. --User:Warrior777 (talk) 05:12, 21 July 2011 (UTC)

Epidemiology

The Polish wiki states the ratio men:women is 10:1. Martin Kuštek 17:59, 14 October 2006 (UTC)

My rheumatologist says that the high men:women ratio in some sources is due to the fact that AS is often misdiagnosed in women because their symptoms are atypical of the "traditional" AS profile: Lots of lower back pain, sciatic symptoms that don't go away with treatment, etc., instead of stooped shoulders/neck/upper back. One study from 1998 indicated that about 20% of women diagnosed with AS developed it in their hips/pelvis area first and their symptoms coincided with a recent pregnancy (which puts a lot of strain on the lower spine as well as the immune system). My AS was diagnosed from my lower back pain (and confirmed on x-ray) after a number of orthopedists, neurologists, and other specialists missed what according to my rheumatologist should have been obvious symptoms (bone spurs up and down the spine, pain on changing positions from lying flat to standing or stooping to standing, etc.). Food for thought... Scarletsmith (talk) 12:56, 18 May 2008 (UTC)

Pope John Paul II

Please can anyone verify the reliability of such an article?
(John Reveille, M.D - UT-Huston)

[...] Like Pope John Paul II, many AS patients develop a curvature of the spine that forces them into a stooped position, with their head hanging lower than their shoulders. [...]

Sensei 07:40, 12 January 2007 (UTC)

Not a verification. I wonder if the writer of the quote was just taking a very visible stooping example that nearly everyone is familiar with and explaining that's what can happen to an AS sufferer. I don't believe the pope had AS. One article said osteoporosis, which sounds reasonable. Student7 12:39, 12 January 2007 (UTC)
This article here mentions in passing that the Pope had AS: http://www.healthleader.uthouston.edu/archive/Back_Spine/2003/ankylosing_spondylitis-0908.html Dollarwizard (talk) 16:40, 8 December 2009 (UTC)

Picture?

Could we not get a better picture for this article than the Leonard Trask "freakshow" poster?? I realize he's a historic case, but that image should be lower in the article. IMHO, it doesn't represent the article very well at all. ++ Arx Fortis 23:15, 24 January 2007 (UTC)

I asked to the Spondylitis American Association their permission to put one or two pictures in the article, especially the process of ankylosing, but I had no answer so far. --Sensei 06:22, 25 January 2007 (UTC)
Permission agreed from the Spondylitis Association of America. The site has been updated. -- Sensei 10:47, 27 January 2007 (UTC)
Comment Leonard, suffered a broken neck before the onset of his AS perhaps the cause of his severe deformity more so then AS. Unfortunately, that's the way Lenard was apparently. Some people do have to undergo surgery to correct extensive deformity especially deformities that block the air passage. A potentially dangerous surgery I might add. The neck is a very complicated appendage. --User:Warrior777 (talk) 07:23, 21 July 2011 (UTC)

AS and Porphyria

The modifications adding porphyria were indented in order to distingush them from the text. I didn't find any evidence on PubMed about connections between autoimmune diseases and porphyria. I only found a case study, PMID 17048215 (patient with AS and porphyria), but I don't see any journal about this very particular topic.

If the modifier won't add a correct respected journal reference, I think it would be better to remove the modification. Sensei 15:03, 9 February 2007 (UTC)

We've had a prolific "porphyria expert" adding similar content to other articles. JFW | T@lk 16:53, 20 April 2007 (UTC)

Lancet

doi:10.1016/S0140-6736(07)60635-7 - recent review in the Lancet. JFW | T@lk 16:53, 20 April 2007 (UTC)

External links to patient support groups (especially online chat boards), blogs, and fundraising groups normally not accepted on Wikipedia. Also, to prevent a proliferation of links, it's good to avoid more than one link to any website. Please read the external links policy and the specific rules for medical articles before adding more external links. WhatamIdoing (talk) 00:41, 13 January 2008 (UTC)

Chiropractors and masseurs

I generally like positive statements such as "chiropractors familiar with the condition should...." but for this condition, I believe the statement is usually framed in the negative (contra-indicated): "The patient should not use the normal facilities of Chiropractors and masseurs unfamiliar with this condition." I believe it is dangerous. A patient's spine could be broken and death could result from treatment by an uninformed or naive practitioner. Student7 (talk) 21:17, 18 December 2008 (UTC)

I have to agree with this. Here's a quote, and source:

Chiropractic Treatment - Some people with spondylitis swear by regular chiropractic sessions, but doctors do not recommend this treatment for ankylosing spondylitis.

"Anyone with limited spinal mobility due to [spondylitis] should avoid manipulation of their back or neck by chiropractors and masseurs because it can be dangerous," claims Dr. Muhammad Asim Khan, rheumatologist, and AS patient. Dr. Khan explains that chiropractic treatments have sometimes inadvertently led to spinal fractures and neurological complications, especially in individuals with fusion (extra bone growth) due to spondylitis." - Spondylitis Assoication of American, http://www.spondylitis.org/patient_resources/alternative.aspx?PgSrch=alternative —Preceding unsigned comment added by 69.31.251.139 (talk) 21:14, 8 October 2009 (UTC)

  • Heat treatments (heating pads/rice sock) might be as effective as a masseurs. Neither approach being effective for long term relief of the condition but maybe very effective for reducing morning stiffness and symptoms arising from changes in the weather. These treatment being more effective in those with debilitating forms of the disease then perhaps others. I would not go to a chiropractors myself. For me that would be a really bad idea.--User:Warrior777 (talk) 08:15, 23 November 2011 (UTC)
I don't care for negative inventories usually, but I did add ...139's referenced material. Student7 (talk) 15:22, 26 November 2011 (UTC)

Mick Mars and other famous AS patients?

The Motley Crue guitarist is one of the most famous known AS patients. Is this notable enough to put a section into the Wikipedia article, along with other famous patients? Dollarwizard (talk) 14:19, 6 December 2009 (UTC)

Okay, I took the initiative and added the section myself. In many cases, citations are necessary. I will need to get to them later. Dollarwizard (talk) 16:32, 8 December 2009 (UTC)

Citations are really necessary now, not later, particularly for "notables" which is close to fluff anyway.
It didn't break my heart when someone deleted this list a while back. The problem was determining whether they actually had AS or not. Cousins is easy. Since he "recovered" he clearly did not have AS. Since everybody will want to insert it, it probably should be someplace with that qualifier.
Also, you will be amazed at how many dozens of people you never heard of, but have articles (alas) and will be inserted in here by somebody. Just try to keep it to "well-known." There is no policy for that and it won't be tolerated in the long run. (I tried it for another article about a fluff award given out recklessly to everybody. it's not a hundred yet, but it will be!). Student7 (talk) 15:31, 10 December 2009 (UTC)
Okay, I will add citations. I don't have a lot of time, but I will try to add one citation per day to the section.
It certainly will break my heart if the section gets deleted. I'm not sure if you have AS (I do), and it's so crucial to spreading awareness of this disease for well-known sufferers to be identified.
By the way, I wonder if there should be a section of celebrities who *might* have had AS. Cousins would be one. Also, if you google or bing Pope John Paul II and Ankylosing Spondylitis, there is some speculation out there that he did in fact have it.
Anyway though, I'll start adding the citations, starting today with Mick Mars. Dollarwizard (talk) 22:42, 11 December 2009 (UTC)
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