Hi Everyone,
Please note that we have been moving certain new threads that have their own topics on the boards. This will not only give you better exposure for your thread but will also be easier to find when searched.
Please try to post your questions and comments in the appropriate section and we will appreciate it very much. This will make it easier for the moderators and the members to find their threads.
Thank you all so much! :)
The Sjogren's World Staff
Thank you, thank you. I've taken to wading through "most recent posts" rather than trying to sort out the topics under "general discussion." Kind of like trying to find something in the pile of paper at my desk. . .
Genko
Pooh, I thought I was just losing more of my mind as I could never remember where I had posted. Thank goodness you let me know what was going on. I probably am to blame for some of this also. Irish ;D
Hi Irish,
When the post is moved, a notice will be left behind saying it has been moved with a link to the new location. We sure don't anyone to think they are "losing it" when their post isn't where they posted it, or think that their post has been deleted. :) We've actually always tried to keep up with this process but haven't been quite as diligent about it lately.
So, your mind is still in tact, lol. If you're like me, I can't afford to lose any more of it than I have already. ;D
Hugs,
quiger
Hi Linda, Billye, Scottie & Pooh;
I tried to post a new topic, but I clicked post but no response.
Can you help me to post this as a new topic ?
Sjogrensworld member's treatment survey
Lets the survey numbers speak to itself
I am a retired software engineer/database administrator and have suffered from Sjogran's for 5 years.
In order to find a solution for members and myself, I would like to be a Sjogrensworld volunteer.
I designed a standard form, listed all my treatments,and scored each of them which can be reviewed as
a quick survey report. I also put in additional experience on Sjogrens product topics.
Why do I want to do this?
Linda suggested systemic treatment like Plaquenil to me that I want to try. I have had negative experiences
both on Restasis and Punctal plug. I used the 3 key words to search on Sjogrens Forum which showed
a lot of related polls to me, both positive and negative, but it is hard to get a overall picture
on each SJS product or treatment.
This will be my poll vote and I hope more SJS users can input scores
on each SJS product and generate a simple consumer report automatically online.
Edited by Jo/Spring on 11/11/2007
JCSUN,
I think you have a grand idea here! Please do not take offense on me altering your post and signature (that is a first for me) until we make some decisions.
I for one appreciate your thoughts on organizing the sharing, being an organizer myself. I appreciate you wanting to do this.
However, we would prefer to discuss this amoung our staff and yourself, before making this an activity for our users. I am sure you understand.
Due to our rules and how your poll works (it has OUR users input their names that they use on our board) I think it could be invasive to their privacy and that they may think they are doing something for SjogrensWorld, when they are not (at this time). They have built up a trust with us and we do not in any way want to break that trust.
We would like to ask you to please hold up on posting any more links to this survey while we talk with you and ourselves, and we will definitely have an answer within the week.
By all means, post and ask our users within our boards if they would like this idea. Just please hold off on posting your link, for now.
Sincerely,
on behalf of Sjogren's World Staff
Jo/Spring
President, Sjogren's World
Dear Spring Jo.
I moved my Survey posting at Sjogren's World and Replaced
with my experience on depression.
I put it on a POLLS as you want me to do :
Question: What is your experience on SJS prescription? Plugs, Restasis or Plaquenil? 6 max vote
https://sjogrensworld.org/index.php?topic=3711.0 (https://sjogrensworld.org/index.php?topic=3711.0)
The following is a copy of my email to return yours email
Thanks you email and your are right, I should not use
Sjogrensworld User name, I changed my signature (for
no link to my website) until you make some decisions.
If you and your staff like my thoughts on organizing
the sharing, I will work with your staff under you web
site project manager supervise, I can work at home let
this become a real survey for Sjogrensworld users.
If a link on your web site and 1000 users input data,
It will be more useful as a Consumers report.
If you and your staff do not like this I can
understand also, I will never use sjogrensworld users
name again just consider it is my own survey for fun.
If you and your staff like to share more with me, we
can exchange our telephone, just let me know what is
the best time I can call you or you can call me.
Pooh, I have posted before, but find I don't know how to reply to posts now. I want to reply to the "Sweating" discussion, but find no icon for "posting" or "replying." I've been thinking my mind is going, and now I'm sure! Help. Dixie
Hi Dixie,
How did you reply to this post? You do it the same way dear. If you look at the bottom on the post you will see the selection of things to do. Don't feel bad, I've been doing this for over 4 yrs. now and I still get mixed up on posting.
Have a great weekend.
Hugs, Pooh
Thanks, Pooh. Perhaps I've got it now! Dixie