Feel free to use this post to discuss the results.
I hope to have the other pages up tonight or tomorrow. We'll see how my hands hold out...
Edited to correct the thread title. Oops!
Pip!2008-03-14 13:29:16Well, the first thing I notices was 1/4 of us didn't start with symetrical pain. That's interesting as heck to me as I keep saying more of us are Palindromic (or otherwise not strict RA) than the docs say.
Then next thing I noticed was a good third didn't feel triggered by anything. Would that mean a general slow coming on of the disease? Are these people more mild?
Another interesting thing is 16% thought infection - BUT - if you add in the virus, vaccine, flu shot, and possible pneumonia then that infection 'rate' jumps to 20%. Wow!
Another interesting facet is the homonal connection - childbirth, pregnancy, hormone change, hysterectomy, menapause gets a whopping 7.36%. I didn't know what to do about the polyp person - that could be infection or hormonal - so I left them out. LOL
Also, we're younger than I thought at onset but we don't get diagnosed until the decade later. HOWEVER - the bonus is a HUGE portion (40%) of us were diagnosed within 3 months. That's a heck of a lot better than what's posted on BB's and gives me hope.
Also, most of us have other AI diseases - the greatest percentages were OA, Thyroid, and Fibro. Not sure what to make of this yet. LOL
40% are RF negative - sucks for you guys. I'm betting you are the people that took so long to be diagnosed.
OK, correct me if I'm wrong - but no way do 2 people have RF's of 22000. That person or persons would have an easy job selling their blood.
And way too many of you have no idea what their blood works says (excusing the JRA peeps because they are kids). If you're an adult - PULL YOUR records!
Off the soapbox now!
Pip
[QUOTE=Pip!]Then next thing I noticed was a good third didn't feel triggered by anything. Would that mean a general slow coming on of the disease? Are these people more mild?[/quote]In looking back for 4 years I would hit a wall about the same time every day (1-3pm) where I would just want to fall asleep. This would pass after 30min and away I would go again.
Stephen -
Do you consider yourself mild now?
And I didn't notice that! I wonder if more men are just not online. I find THAT hard to believe.
Pip
I would say that I am mild (and very lucky) compared to what I read here.
I am also very aware that at any moment I could be in doggy doo doo if I do not look after myself
by listening to my body and take the action required.
IE: rest, back away from what might be bothering me, up the pred a tad, do it tomorrow instead of all today.
Generally try to stay as calm as possible .
I think men get turned off very quickly by all the rehashing of the same on boards like this.
Men would rather suffer in silence or just do it rather than just talk , and talk.
I was thinking of starting a thread along these lines but not sure if I could cop all the stick I'm sure would follow.
I was a little shocked by how long it took for them to get diagnosed, it took over three years for me! I think thats because I have a rarer form of JRA and I don't have the RA factor in my blood. I don't know, I guess it helped, but the poll if you look wasn't from a very big pool (not many people), that makes the validity a lot less!I think you should make a seperate post. If stuff happens, it kind of proves your point.
I do think men are more likely to suffer in silence. It's manly. I wonder if the depression level is higher because of that.
Pip
[QUOTE=Pip!]I do think men are more likely to suffer in silence. It's manly. I wonder if the depression level is higher because of that.Pip[/QUOTE] I think depression is a big part of this disease and from personal experience is not gender specific.
I know I went thru a very rough patch as I have found a couple of other blokes have.
I agree women seem to complain more than men!The only other thing I can say about the gender is that question wasn't included at first so 1/4 of the people never answered it...maybe more of them were men?
And the 22000 RF factor I assume was either a typo or a different scale on the labs, but I have no way to "correct" it.
[QUOTE=Pip!]Well, the first thing I notices was 1/4 of us didn't start with symetrical pain. That's interesting as heck to me as I keep saying more of us are Palindromic (or otherwise not strict RA) than the docs say.[/quote]
I wonder how many of the asymmetric types started on their dominant side? My left hand is always worse than my right hand... but I am militantly left-handed.
RA is symmetrical..but doesn't mean it starts out that way or that the inflammation occurs simutanously. Nothing is said about a time frame for the symmetry to occur. You think plaindromic but my understanding of palindromic rheumatism besides the fact it is rare is that damage does not occur with the attack which differentiates it from RA. Personally from reading the diagnositic criterea of Palindromic I don't see how that would be a quick diagnosis. By the time you could get a good diagnosis it would be clear if it were RA or not
I put down that I didn't feel as if I had a specific identifieble trigger and my case is far from mild
20% thinking infection means 80% think no infection
I've always thought that there was some kind of hormonal influence but tend to think ity happens in utero during developement of the immune system
Age is something that this survey is going to get a scewed look. Younger people tend to use computers more.
OA and Fibromylagia are not considered autoimmune. Most of us have OA as a result of RA damage
A lot of those number questions were at the time of diagnosis. I'm sorry Pip..that was over 20 years ago. I have a good memory but not that good
Buckeye!
Of course it's not scientific - but it does show some interesting things.
As for the Palindromic bit - no, the 25% that go on to be all the time PRA get damage. I 'personally' think there are more Palindromic people than MD's think but the time span to damage/regular RA is shorter for some. I think I boogied myself straight to RA because of how it played out. Your mileage may vary!
And man are you right about the diagnositic criteria taking a long time before they identify what exactly is going on! I wasted almost 2 years before anybody figured out what it was.
Did you come on strong at first? Or did it build up? I've met a lot of people that said they spent a few years with 'hand pain' and then KaBam! I'm just thinking that a slow build up would be harder to link to an infection. Like my abscessed tooth - if I hadn't tied that together in my own mind, I'd have not followed that link. That really wasn't where my 'infection' was - but how was I to know that at the time?
Yes on the 80/20 - but again, I'm coming from the infection connection. That 20% is a LOT more than what they say is for 'reactive arthritis' or even Lyme.
Fabulous thoughts on the in uteros link. Of course, I disagree, but...please expand as I'm fascinated about that because I didn't even think of that.
Well, I think OA or Fibro is 'infection' again - all of a sudden my hubby has DDD. I think its a progression of his previous 'diabetes' infection.
But how skewed will the results be if older people filled out the survey? Looks to me there were quite a few in the older categories.
Hugs,
Pip
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