Guest guest Posted August 1, 2007 Report Share Posted August 1, 2007 In a message dated 8/1/2007 10:10:04 P.M. Eastern Daylight Time, TipsyLass36@... writes: Hey gang, Still's disease has made it to prime time. I'm watching a show called Diagnosis X on the Learning Channel right now, kind of an over- dramatized, poorly acted show, but this is the first time I've seen Still's on one of these medical mystery shows (I sent out a slew of emails last fall to House and Mystery Diagnosis, etc.). Oh GREAT--I just got to the end of the show. What a disappointment! In this " reenactment " the patient only has a fever and a slight rash on his back, no real joint pain or other more severe symptoms. His treatment? ASPIRIN. The doctor finished the diagnosis with a comment that was something like, " The prognosis for is excellent...excellent...<WBR>Given all the prognoses that we were ruling out, this is a good one... will be able to get on with his life and have a condition that's treatable by the simplest medication. Aspirin. " What the hell??? I guess it's time to send out another flurry of emails. Arrrgghhhhhh. (in Maine) PS. Doubly frustrated here today because after two weeks on Kineret, I developed injection site reactions and my stomach and thighs are covered with big bruises and itchy patches of rash AND I had an evening flare last night. Gee... maybe I should just take some ASPIRIN so I can get on with my life. PSS. Sorry for the rant!!! Hi, I also am from Maine. Outside Portland. I have been diagnosed with Stills over a year ago after suffering for almost a year. Dr. I had gave me wrong meds and my blood counts dropped to the bottom. Bruises everywhere and nose bleeds and they were afraid of hemmoraging. Please let me know how you are doing. in Maine ************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2007 Report Share Posted August 1, 2007 In a message dated 8/1/2007 10:10:04 P.M. Eastern Daylight Time, TipsyLass36@... writes: Hey gang, Still's disease has made it to prime time. I'm watching a show called Diagnosis X on the Learning Channel right now, kind of an over- dramatized, poorly acted show, but this is the first time I've seen Still's on one of these medical mystery shows (I sent out a slew of emails last fall to House and Mystery Diagnosis, etc.). Oh GREAT--I just got to the end of the show. What a disappointment! In this " reenactment " the patient only has a fever and a slight rash on his back, no real joint pain or other more severe symptoms. His treatment? ASPIRIN. The doctor finished the diagnosis with a comment that was something like, " The prognosis for is excellent...excellent...<WBR>Given all the prognoses that we were ruling out, this is a good one... will be able to get on with his life and have a condition that's treatable by the simplest medication. Aspirin. " What the hell??? I guess it's time to send out another flurry of emails. Arrrgghhhhhh. (in Maine) PS. Doubly frustrated here today because after two weeks on Kineret, I developed injection site reactions and my stomach and thighs are covered with big bruises and itchy patches of rash AND I had an evening flare last night. Gee... maybe I should just take some ASPIRIN so I can get on with my life. PSS. Sorry for the rant!!! Hi, I also am from Maine. Outside Portland. I have been diagnosed with Stills over a year ago after suffering for almost a year. Dr. I had gave me wrong meds and my blood counts dropped to the bottom. Bruises everywhere and nose bleeds and they were afraid of hemmoraging. Please let me know how you are doing. in Maine ************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2007 Report Share Posted August 1, 2007 Hey Go ahead and rant....and please give the show hell! Tell them what they can do with that aspirin each day of the rest of their lives!!!!!!!!!!!!! Larry B fromNC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2007 Report Share Posted August 1, 2007 Hey Go ahead and rant....and please give the show hell! Tell them what they can do with that aspirin each day of the rest of their lives!!!!!!!!!!!!! Larry B fromNC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2007 Report Share Posted August 1, 2007 Oh Larry--I DID. I can type like a fiend. Here's SOME of what I sent: Adult Still's isn't usually as " simple " as a fever and a rash—it usually includes debilitating joint pain, pleuritis, pleural effusion, pericardial effusion, and enlargement of the speen and liver. For two thirds of adults who get Still's, treatment means high doses of prednisone, then methotrexate, then an anti-TNF drug (like Enbrel or Remicade), or, most recently, treatment with an interleukin-1 receptor antagonist (IL-1Ra) called Kineret. People with chronic Still's inject themselves with drugs that burn and itch, take vicodin and morphine and oxy to control the awful pain, wind up in wheelchairs, and die from complications related to the disease. To say " treatment is simple " is to grossly mischaracterize what the majority of people who get the disease go through. While I'm sure Dr. Tung didn't mean any harm, he just inflicted a great deal. His encounter with Still's may have been with a patient who had a mild, non-reoccurring form (lucky ), but Dr. Tung should have stated that WAS lucky, and he should have mentioned that many patients with Still's are NOT. I would appreciate your forwarding this email to Dr. Tung if possible. If he would like more information, he can contact me at the telephone number listed below or by email at khall@.... I have had Adult Still's for two years (and subscribe to the International Still's Disease Foundation listserv) so have read the stories of numerous people with Adult Still's from all over the world, many of whose lives have been destroyed by this disease. I'm lucky too—I'm still able to walk and still able to work but still battle flares and fevers and joint pain despite a tri-treatment of prednisone, MTX, and Kineret, all of which have serious side effects and long-term consequences. Ahhhh… if only I'd taken an ASPIRIN. Thank you for your time. Hall > > Hey > Go ahead and rant....and please give the show hell! > Tell them what they can do with that aspirin each day of the rest of their lives!!!!!!!!!!!!! > Larry B fromNC > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2007 Report Share Posted August 1, 2007 Oh Larry--I DID. I can type like a fiend. Here's SOME of what I sent: Adult Still's isn't usually as " simple " as a fever and a rash—it usually includes debilitating joint pain, pleuritis, pleural effusion, pericardial effusion, and enlargement of the speen and liver. For two thirds of adults who get Still's, treatment means high doses of prednisone, then methotrexate, then an anti-TNF drug (like Enbrel or Remicade), or, most recently, treatment with an interleukin-1 receptor antagonist (IL-1Ra) called Kineret. People with chronic Still's inject themselves with drugs that burn and itch, take vicodin and morphine and oxy to control the awful pain, wind up in wheelchairs, and die from complications related to the disease. To say " treatment is simple " is to grossly mischaracterize what the majority of people who get the disease go through. While I'm sure Dr. Tung didn't mean any harm, he just inflicted a great deal. His encounter with Still's may have been with a patient who had a mild, non-reoccurring form (lucky ), but Dr. Tung should have stated that WAS lucky, and he should have mentioned that many patients with Still's are NOT. I would appreciate your forwarding this email to Dr. Tung if possible. If he would like more information, he can contact me at the telephone number listed below or by email at khall@.... I have had Adult Still's for two years (and subscribe to the International Still's Disease Foundation listserv) so have read the stories of numerous people with Adult Still's from all over the world, many of whose lives have been destroyed by this disease. I'm lucky too—I'm still able to walk and still able to work but still battle flares and fevers and joint pain despite a tri-treatment of prednisone, MTX, and Kineret, all of which have serious side effects and long-term consequences. Ahhhh… if only I'd taken an ASPIRIN. Thank you for your time. Hall > > Hey > Go ahead and rant....and please give the show hell! > Tell them what they can do with that aspirin each day of the rest of their lives!!!!!!!!!!!!! > Larry B fromNC > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2007 Report Share Posted August 1, 2007 LOVE IT!!!!!!!! Way to go and THANK YOU!!!!!!! Larry Ps. Very nicely done! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2007 Report Share Posted August 1, 2007 LOVE IT!!!!!!!! Way to go and THANK YOU!!!!!!! Larry Ps. Very nicely done! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Now I know what's wrong with me...I've tried everything BUT aspirin! I'm going to fire my Dr immediately! Great letter . By the way, they did feature Still's on House, in December with a rerun in January...but it was in conjunction with a tumor on the thyroid (I think) that made the girl stop growing. But of course she was " cured " ! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Now I know what's wrong with me...I've tried everything BUT aspirin! I'm going to fire my Dr immediately! Great letter . By the way, they did feature Still's on House, in December with a rerun in January...but it was in conjunction with a tumor on the thyroid (I think) that made the girl stop growing. But of course she was " cured " ! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Brett, YOU DA MAN!!! YOU GO BROTHER! LB Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Brett, YOU DA MAN!!! YOU GO BROTHER! LB Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Hey , House did have Stills mentioned I think in 2 episodes last year, though not a Stills diagnosis. still, it's progress. Too bad an aspirin was the outcome on Diagnosis X. Terrible. Try an antihistamine - Benedryl - for the itch with the shots. You could try oral or put cream on them. it should help. For me, I did have those for a month or so but then they went away and I rarely have that now, so have faith that they will go away. Houston, Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Hi , I love the message you sent to the show. Especially the asprin line! Thanks! </HTML> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Hi , I love the message you sent to the show. Especially the asprin line! Thanks! </HTML> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2008 Report Share Posted February 26, 2008 Stills disease...I was diagnosed last month and I'd love to think it could be treated with just asprin! Mandi In a message dated 2/25/2008 8:20:42 P.M. Eastern Standard Time, sugafreak21@... writes: Did anyone catch the episode on Sunday where the farmer had arthritic type symptoms and was Dx'x with " Sides " or " cyde's " disease? I am trying to find out the nam of the disease they said he had. They treated him with aspirin. **************Ideas to please picky eaters. Watch video on AOL Living. (http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/ 2050827?NCID=aolcmp00300000002598) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2008 Report Share Posted February 26, 2008 <<Did anyone catch the episode on Sunday where the farmer had arthritic type symptoms and was Dx'x with " Sides " or " cyde's " disease? I am trying to find out the nam of the disease they said he had. They treated him with aspirin.>> He had Stills Disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2008 Report Share Posted April 23, 2008 , try to find it through the Dis. Channel may be they have a printed version or possibly another airing, A neighbor told me she saw a show on the Discovery Channel called Diagnosis X and it was about a woman that became ill from mold. She thought I would like it. Have not seen it yet. It seemed to make her understand our illness. **************Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. (http://autos.aol.com/used?NCID=aolcmp00300000002851) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2008 Report Share Posted April 23, 2008 Ok Sue, the neighbor also said she will tell me is she can finds out if it is on again. I will let you know if it is on again. --- In , ssr3351@... wrote: > > > , try to find it through the Dis. Channel may be they have a printed > version or possibly another airing, > > A neighbor told me she saw a show on the Discovery Channel called > Diagnosis X and it was about a woman that became ill from mold. She > thought I would like it. Have not seen it yet. It seemed to make her > understand our illness. > > > > > > > **************Need a new ride? Check out the largest site for U.S. used car > listings at AOL Autos. > (http://autos.aol.com/used?NCID=aolcmp00300000002851) > > > Quote Link to comment Share on other sites More sharing options...
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