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Re: What do you want to see on our website? [Re: JamesChoi] #250816
04/12/13 05:22 PM
04/12/13 05:22 PM
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JamesChoi Offline OP
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JamesChoi  Offline OP
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Hey thanks everyone.

I really like Whitecell's thoughts that begin with - Now that you are here. I would say, if you are first diagnosed or you are just searching symptoms online then an FAQ and a step by step process might be more important than just stating medical facts about spondylitis.

I am already planning to add a section pertaining to managing as with health and fitness so I am glad someone already wants to see it.

For the forum I'm not sure how we will change it yet...but we will. So far this is my favorite message board - http://stackoverflow.com/. It has nothing to do with health or well being but the way people interact with each other and each question is great. So the most important questions are the focus of the site. If you have a link to a message board that you like please reply with a link so I can take a look.

Thank you for all your responses. This is really helpful.

Last edited by JamesChoi; 04/12/13 05:23 PM.

     
Re: What do you want to see on our website? [Re: JamesChoi] #250852
04/13/13 06:31 PM
04/13/13 06:31 PM
Joined: May 2010
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Whidbey Island WA
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WhiteCell Offline
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I agree Maybe FAQ specific to the areas that always get brought up. Pain, biologics, mobility, what works...? Just thinking out loud.


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: What do you want to see on our website? [Re: JamesChoi] #251047
04/19/13 05:32 AM
04/19/13 05:32 AM
Joined: Jan 2011
Posts: 252
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ancient Offline
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I agree with Jen. I would like to see a more up to date medication list with more information. I like to know what options are available when something else isn't working. It gives me time to research the med and decide if it is right for me.

Would it be possible to follow some members and see what meds worked for them? Like a spondy med success rate? I don't know if that is possible. (sounds like a great deal of work now that I think about it). It would just be interesting to see what treatments had a good success rate among our community. As someone else said I'm just thinking out loud too..


lori
diagnosed USpA Nov 2010. Changed to As 2012. Low Vit D
suffered since teenager multiple surgeries.IBS, Migraines, carpal and tarsal tunnel, TMJ, (failed Enbrel& Humira),Started Remicade sept. 2012,Methotrexate,Prednisone,Relafen, Amitriptylin,Gabapentin, Fioricet, Topamax,,Protonix,Amlodipine, Vit. D, Folic acid,
Re: What do you want to see on our website? [Re: WhiteCell] #251084
04/19/13 11:38 PM
04/19/13 11:38 PM
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Posts: 152
san diego, CA
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babygirl536 Offline
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Originally Posted By: WhiteCell
Finally a category for the unsolved, horrendous cases borne by people where all else has failed a category where all of us (and more) can assist. Those really hard cases that no one can seem to get solved. I think linking this category to a AS sponsored MD or MDs who can weigh in and make referrals. There is no reason for someone to arrive on the site lost, rejected and in pain and leave the same way.

Thank you for listening.


I agree - i try not to post all of my whining and complaining, but the search function sometimes pulls up soooooo many of the same posts that contain the specific word/phrase i'm looking for, and while all the posts are IMMENSELY helpful sometimes combing through the results gets tedious.


Female, 29 - loving wife & mommy to one <3
Finally diagnosed in Oct 2011
HLAB27+
Remicade - Oct 2012
Fibromyalgia - June 2013
Tendonitis - February 2014
Humira: Failed / NSAIDS: Failed / Steroid Epidurals: Failed, caused more pain / Physical Therapy, Massage Therapy, and Chiropractics: Failed / gabapentin: Failed
Re: What do you want to see on our website? [Re: JamesChoi] #251085
04/19/13 11:39 PM
04/19/13 11:39 PM
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san diego, CA
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babygirl536 Offline
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on that note - maybe we can fix the search function? maybe it can search all of the threads/site? i don't know - just a thought.


Female, 29 - loving wife & mommy to one <3
Finally diagnosed in Oct 2011
HLAB27+
Remicade - Oct 2012
Fibromyalgia - June 2013
Tendonitis - February 2014
Humira: Failed / NSAIDS: Failed / Steroid Epidurals: Failed, caused more pain / Physical Therapy, Massage Therapy, and Chiropractics: Failed / gabapentin: Failed
Re: What do you want to see on our website? [Re: JamesChoi] #251473
04/29/13 03:32 PM
04/29/13 03:32 PM
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Cincinnati, OH
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JenInCincy Offline
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Seems like the number of "sticky" threads has been reduced wink ... thanks!


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: What do you want to see on our website / forum? [Re: JamesChoi] #251870
05/08/13 05:37 AM
05/08/13 05:37 AM
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Saeed Offline
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Greetings James
My first impression of AS site is fantastic, thanks to you and all involved making it happen since this is a great and unique source of information.
I like to suggest better search capabilities such as indexing for the site. As an example I am looking for topics related to Iritis or Uvitis and I am sure this has beed discussed many times.



Sfoudeh
Re: What do you want to see on our website / forum? [Re: JamesChoi] #251955
05/09/13 04:13 PM
05/09/13 04:13 PM
Joined: Feb 2011
Posts: 32
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JamesChoi Offline OP
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JamesChoi  Offline OP
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Yup the stickies have been reduced. For the search engine the new website will have a new search engine so we'll see how that goes. For the forum I'm not sure what we will do yet so I'm not sure about that either. I'll try to figure out what to do.

Again, thanks for all your input. I will keep checking this thread periodically.


     
Re: What do you want to see on our website / forum? [Re: JamesChoi] #251961
05/09/13 06:02 PM
05/09/13 06:02 PM
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Posts: 13,279
Cincinnati, OH
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JenInCincy Offline
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When you click "search" you can click on "advanced search" which brings you to this page:

http://forums.spondylitis.org/ubbthreads.php?ubb=search

babygirl & Saeed, you can search on one forum or all, for a keyword in a title and/or post, for whatever time frame you like.


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: What do you want to see on our website? [Re: JamesChoi] #254234
06/21/13 01:17 PM
06/21/13 01:17 PM
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Thanks so much for striving to hear from all and make the site so helpful. I'm newly diagnosed, need to start exercising and confused about which types of movement will be better/worse/healthier/riskier for me. I realize the disease affects us all quite differently, but I'd welcome any wisdom on this topic.

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