I am really enjoying being here..... It is great to hear that somethings that I never thought was any part of sjogrins might just be.... I am learning lots here.... I have had sjogrins for 20 years but still I am learning.... This is a place where others really understand ... it seems everyone is so very different but yet so much a like... if that makes sense.
I don't know who started this site but God Bless You....It is very well needed.
Hey and If I reply too often please tell me to go find something else to do for a few days....LOL I like it here so much...
It sort of makes me think of Sjogrins as a puzzle and I have to always keep putting the puzzle pieces together and hearing what others are going through helps me so much with that puzzle...
One more thing.... I think all drs that treat Sjogrins should visit this site and see what everyone is saying.... they would learn more here then in any text book or even in their medical practice.... I think it is more open and folks talk more freely here then in any dr's office.
Now I will shut up for few hours... I am going to a seminar with my sister on MS.... we are close sister maybe due to us both having autoimmune diseases, we just know we are sick but don't know how each other's autoimmune disease might effect our bodies. That is why such a site like this is wonderful place for sjogrins patients!!!!!!
Thanks again to all that are involved in this site.
Carrottop
Hi Carrottop,
If you go to the HOME page and click on Staff, you will meet Spring and Care, the two wonderful ladies that started this web site.
It was just the 2 of them for a lot of years building this place for those of us with Sjs. At the end of this year it will be 10 yrs. old and a lot of members have passed through on their journey with Sjs.
Some have stayed, some have left us, but there always seems to be more coming in. Our doors will always be open until there is no longer a need.
Let's hope it comes soon. ;D
Hugs, Pooh
Hi Carrottop (love that handle):
QuoteOne more thing.... I think all drs that treat Sjogrins should visit this site and see what everyone is saying.... they would learn more here then in any text book or even in their medical practice.... I think it is more open and folks talk more freely here then in any dr's office.
You are absolutely right!!! I think this site should be required reading for all rheumatologists and all other "ologists" who treat us.
Also, have you seen this thread about a possible new treatment for MS?
https://sjogrensworld.org/index.php?topic=7858.0
Best wishes,
Sue
Hi Carrottop!
I'm so glad to hear that you enjoy being here...we enjoy having you! :) And I know what you mean....I still learn new things here all of the time.....we can never know it all...but sharing with each other sure increases the knowledge base, doesn't it?
Keep coming back.....you can never be too active here...my opinion is the more you participate, the more you get out of this place...I guess thats true for anything!
I hope the MS conference was informative...its nice that you and your sister have each other as many symptoms of MS and SS overlap.....you can be each others support system and I think that's great!
thanks everyone....
Hey about the stem cell for MS.... the dr did talk about that but for treatment (now if I understood him right) they are picking just certain people that is the younger and with just one certain dx of MS (which I am unsure) but I think he said it was for Remittance type of MS.... There was so much talked about .... I know my sister will have to learn more about what we heard.... Of course it was a drug company that put on the seminar....They gave us dinner and all so it was very relaxing seminar... But we really enjoyed being together all evening any ways!!!! I will pass this info on to her also. Thanks
I will also have to check out the home page and meet Spring and Care. I looked for something like this for years and ever came acrossed it before...so I missed out for 10 years WOW.... I guess I just don't know how to search for the good places....
Carrottop