More AS facts that are probably just for me.
So I was poking around on about.com regarding muscle twitches and spasms. I slept super hard this morning and now have a knot the size of a mandarin orange in my right side (the side I slept on). I'm sure this is more of my auto-immune stuff, so I was poking around and found that About has an Ankylosing Spondylitis screening quiz. I decided to take it, and here are my results...
Now, because of my research on AS I know there were a couple things that I checked contrary that knocked down my score, but doesn't mean I don't have it. Like one of the questions was am I male or female, and because I'm female it knocked the rating down, but the reasoning there is because men are affected more than women by a ratio in excess of 2:1
And the other one that knocked my score down was that I don't have lots of eye inflammation or bowl issues. But those two are only a fraction of AS patients. Not all with AS have those, and for many it's an issue that arises as the disease continues untreated. (From what I understand in all I've read.) So just because those things aren't issues I deal with doesn't mean that AS isn't the right diagnosis. What all this does mean is statistically it would seem that a diagnosis of AS is appropriate. That treating my symptoms as such makes sense (I guess I'll crack open my Tai Chi DVD...) and that I should probably make sure my Orthopedist and physical therapists understand this issue about me.
I find the internet a real blessing. It gives me tools and resources to seek and bring questions and test results with me when I do go to my doctor visits. I've said it before and I still think it's true, that AS actually is a relief of a diagnosis to me because if my spine does fuse someday, yes my mobility will suffer, but my actual pain will greatly decrease, and that would be such a huge blessing.
I really hope that when I make posts like this one that it doesn't come off as complaining, but as informing. I know I've had this for years. It was debilitating when I worked retail, and to know now ways to rest and stretch and exercise properly has made my life so much better. Before I was at such a loss. So I share these things hopefully to raise awareness. I mean before I started really piecing this all together I had no idea that there was a type of arthritis like this. Sometimes it makes me feel like it all makes sense now, that a lot of my pain issues were not things I did to myself to cause them, but things I just didn't know because I didn't know what I was dealing with something that not everyone knows about. So I feel it important to let others know what I'm dealing with, to give validity to my disability and to let others know what to look for if they're dealing with such things as well.
So that's all for now I guess. This last week was rough sleep wise, so I never was really with it enough to make my phone calls for my appointments. I must be done Monday. I'm pretty sure I'll be able to, my sleeping is starting to even back out to 8 hours per night, or morning.
I'm still not certain if my injections are helping my AS symptoms or not, but they are helping my RA symptoms, I've actually been writing recipe cards by hand and while I have to take lots of breaks at least it's legible, so I'm happy.
Now, because of my research on AS I know there were a couple things that I checked contrary that knocked down my score, but doesn't mean I don't have it. Like one of the questions was am I male or female, and because I'm female it knocked the rating down, but the reasoning there is because men are affected more than women by a ratio in excess of 2:1
And the other one that knocked my score down was that I don't have lots of eye inflammation or bowl issues. But those two are only a fraction of AS patients. Not all with AS have those, and for many it's an issue that arises as the disease continues untreated. (From what I understand in all I've read.) So just because those things aren't issues I deal with doesn't mean that AS isn't the right diagnosis. What all this does mean is statistically it would seem that a diagnosis of AS is appropriate. That treating my symptoms as such makes sense (I guess I'll crack open my Tai Chi DVD...) and that I should probably make sure my Orthopedist and physical therapists understand this issue about me.
I find the internet a real blessing. It gives me tools and resources to seek and bring questions and test results with me when I do go to my doctor visits. I've said it before and I still think it's true, that AS actually is a relief of a diagnosis to me because if my spine does fuse someday, yes my mobility will suffer, but my actual pain will greatly decrease, and that would be such a huge blessing.
I really hope that when I make posts like this one that it doesn't come off as complaining, but as informing. I know I've had this for years. It was debilitating when I worked retail, and to know now ways to rest and stretch and exercise properly has made my life so much better. Before I was at such a loss. So I share these things hopefully to raise awareness. I mean before I started really piecing this all together I had no idea that there was a type of arthritis like this. Sometimes it makes me feel like it all makes sense now, that a lot of my pain issues were not things I did to myself to cause them, but things I just didn't know because I didn't know what I was dealing with something that not everyone knows about. So I feel it important to let others know what I'm dealing with, to give validity to my disability and to let others know what to look for if they're dealing with such things as well.
So that's all for now I guess. This last week was rough sleep wise, so I never was really with it enough to make my phone calls for my appointments. I must be done Monday. I'm pretty sure I'll be able to, my sleeping is starting to even back out to 8 hours per night, or morning.
I'm still not certain if my injections are helping my AS symptoms or not, but they are helping my RA symptoms, I've actually been writing recipe cards by hand and while I have to take lots of breaks at least it's legible, so I'm happy.
Labels: Ankylosing spondylitis, hip pain, medical, medications, pain, quizzes, Rheumatoid Arthritis, symptoms
posted by Celestial Freak @ 6/21/2008 03:27:00 PM
3 Comments:
I did go to the library last week and spent the afternoon reading about all your health issues. I will drop you an email. I did read that AS is 3 times more common in men like you say. Also that it affects the eyes but only in 1/3 of people. Age of onset is 20-40 so that is you. I did read that you can have a dna test. HLA-B27 gene shows up 90% of the time if you have it. I am sure you know all this, but I am doing my research :)
I’m sorry to hear that your AS is flaring up but I wanted to make sure that you’re aware of an organization dedicated specifically to those suffering the effects of AS.
The Spondylitis Association of America (SAA) is the only non-profit organization in the US dedicated to improving the lives of people with ankylosing spondylitis. Formed in 1982, SAA is committed to increasing awareness of AS, providing information and support to people with AS, and ultimately, working to uncover a cure for the disease.
SAA’s mission is to be a leader in the quest to cure AS and related diseases and to empower those affected to live life to the fullest.
No definite numbers are available in terms of prevalence in the US and there are many bad numbers out there. The most up to date estimate is that AS affects .52% of the US population which means there are over one and a half million AS sufferers in this country.
The statistic you cite about the ratio of men to women is also coming under fire. Because AS manifests differently in women (often affecting peripheral joints first) many women go undiagnosed. Many of the world’s most prominent researchers, and members of SAA’s medical board, believe that the disease strikes women just as often as men.
Please be careful about information found on the internet. Much of it is either very old or just plain inaccurate. SAA’s website is updated daily and contains the most up to date, medically verified information available.
Resources are available -- including books, videotapes, brochures and publications, a 600 page website with interactive message boards, a quarterly news magazine, and a tight-knit community of people who understand the daily challenges of living with this chronic illness. For more information, visit www.spondylitis.org.
I hope you’re standing tall soon!
Diann@SAA
Well I hate to admit that I haven't done any research and have nothing to offer you except you have been on my mind and in my prayers. Your post about debating wether or not to post about your difficulties really stuck with me. Quite honestly if people don't want to read about it then they don't have to. It's your blog and you should be able to post what you want. I find most people have no idea what it means to suffer day in and day out, therefore they haven't a clue how devastating AND depressing it can be. I have migraines and that doesn't come close to your suffering. You just take care of yourself, you sound like me researching everything you can to try and find answers. This you know is true-you know yourself best-and you owe it to yourself!!
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