If you are wanting..pleas just click link and follow the directions... This is for everybody!!!If you are wanting..pleas just click link and follow the directions... This is for everybody!!! trying to help those that have Sjogren's syndrome (and AI) http://freeonlinesurveys.com/app/rendersurvey.asp?sid=rr16yitxs28osm8263160&refer=www.facebook.com#.UY6z7Rq9Uhg.facebook
Hi Sass,
Done. Did you create this survey? How is it that you are able to accomplish so much in your condition? I hope this means you are feeling better :) Hugs....
NO..it is something that is trying to help us with Sjogren's...I am still here at the hospital...and may get to go home this week sometime...thanks for doing it for me!!!!
Could you please let us know who is sponsoring this survey? Given the misspellings, I wonder if it is a medical source, or other organized organization, and I'm uncomfortable providing information to an unspecified collector.
I guess I am sponsoring it Linda.....
i am trying to help for the better of the good of Sjogren's syndrome...thru my research I find very few areas of Study for Complications and Connections to each other...This Survey is only to help me gather data for my medical professional to maybe make a connection....If your feel that you do not want to do so...please just overlook it...You do not have to put your name , etc...and skip anything you are not comfortable...although this is just a very generic survey.....I did not write the questions...but a medical friend did...any misspellings...then spell ck missed them....lol...sorry.
This I have said before...
But I do want to address a more important detail here..For those not knowing, i will say first that I have one of those 100% diagnosed considered fatal "complications of Sjogren's syndrome" that was found thru Lung Biopsies at the The Mayo Clinic in Scotsdale, AZ. I am addressing this because it has been mentioned about newcomers coming and being frightened away.
Now, I and my expert team of doctors are fighting this and though it is terminal,With the USA govenment listing it as so.... we are focusing on stopping it in it's tracks or at the least..slowing it down. So far, it has been hit and miss. as there is no cure, it is irreversible and because of it's rarity of being caused by Sjogren's syndrome, there have been NO studies done on how it should be treated.
BUT ME ASIDE.........And this is my more important detail..
Without awareness, there is no knowledge and without knowledge there are no studies and again---NO treatments. Those knowing me or following me for long know that this has long been a mission of mine, not just since my diagnosis of the lung problem this past June of 2012.
I think that when someone goes looking for answers or information it is not for us posters to decide for them what they should see or be limited to..not candy coat some of the realities..Had I known that the dry cough I had for a WHILE..could have led to THIS..i dang sure would have insisted on a CT Scan.
My PCP did not know that..so when she x-ray my lungs and said I had pneumonia, Even the larger group of Pulmonary Specialist mis-diagnoised it...
I was treated and went on my way..and again, and again...until an enlarged heart showed up as well..and iI wound up in a larger hospital..and still sent to a Pulmonary there I waited for results form April till the end of June, suspecting Nothing..because his NP told me I just needed to exercise my lungs..when the Doctor finally looked at it, he was sending me for a lung transplant immediately. Thank goodness HE suggested a second opinion...
Regretfully, none of the sights, forums, etc that I went and studied for years had mentioned anything about it..Reason being..No studies..no awareness...I in good faith cannot ignore these things even though rare. And they are just that VERY RARE.....but we just lost some friends here on this forum....and I feel that I let them down,,,,,,HUGELY SO....
I have to do what I can for me and others to do what I can to help. We can't throw everything that goes on with our bodies into the Sjogren's sink...it does not fit...And we must be as valiant as possible to help others...learn, become aware...and not panic....just be smart... I love you all so much and am just wanting to help.....PLEASE IF I HAVE OFFENDED OR YOU DO NOT WANT TO DO IT....JUST SKIP IT...NO HARD FEELINGS.... Happy Mother's Day to alll..........
Sass, I don't blame you for getting on your band wagon about these lung issues. The lungs have been greatly ignored for a long time when it comes to Sjogrens. I, for one, don't get that as lung tissue secretes mucus and one would think that docs would scratch their heads and check things out. The tendency to blame every cough and gurgle on "asthma" is highly over done. Half the world has bronchospasms these days just by virtue of all the chemicals and dust in the air.
I have to tell you that I mentioned your lung disease that was associated with Sjogrens and my pulmonologist was aware of this. I was elated. She told me that when I come in for my next yearly physical she is going to to the scans to check into this further. Sooo, guess I lucked on with this doc. We just have to be aware and keep on advocating for ourselves. We can't depend on others or even many of our doctors. When we find a good doc who wants to learn along with us we are truly blest.
Here is hoping and praying that you get on the mend and have a better summer than you did winter. Your positive attitude is half the battle. Also, you are fighting this battle for a legion of other fellow Sjoggies and for that we are all eternally grateful. Hugs Irish
thank you Irish...your words and feelings hold great meaning for me..with the utmost respect.....You keep us pushing and going...all of you do...thanks....maybe go home this week from hospital,,but today,,the lungs started making new noises..so an increase in meds longer lasting..and every 4 hours regardless...
Done, I love it... we need to get numbers and educate ourself as well as the medical field. Thanks Sass!!!!
Done and thanks :) :) :) CK
Done also. I'm a new member. Newly dx last November and am finding out the hard way all the many different symptoms and ailment of Sjogrens. I love this website! I have learned more about Sjogrens here then from anywhere else. Thank you all for this and keep up the good work. Funny about educating our doc's. Just went in to see a new PCP because I believe I'm going through a flair up (bruising all over) and migrating pain again. Anyway I asked him when he walked in if he was familiar with Sjogrens and got a yes. I asked "How familiar"? He said he had two other Sjogrens patients. OK--doesn't mean you know alot. Got a blood test and added a check on Magnesium (learned from this web site--thank you). We'll see results this week sometime.
Reggie
way to go Reggie....great job!!!
Thanks Sass for being a trailblazer of sorts. The more we know about the possibility of complications the more ammunition we have for not letting our docs brush off our symptoms. I'm sorry it took so long for you to get diagnosed with the lung involvement. Hope you are out of the hospital soon and breathing easier.
AWW....thanks Odie...I hope to be soon...but it us all of us together, making the efforts...all the people here and members that blaze ahead...I am just another one of you! With hope! Thanks All!!! We gotta be a team!!
smooch!! ~sass~
Done
Survey done!
Duchess
Done, hope this helps.
Thank you Sass just did it.
It is good to see that your feeling better.
Gloria