Guest guest Posted May 11, 2001 Report Share Posted May 11, 2001 In a message dated 05/11/2001 12:15:53 AM Eastern Daylight Time, lschroe3@... writes: << asking anyone who has an autoimmune disease if they have ever been unfaithful outside marriage and this is supposedly, a first line question asked by all doctors when someone has an autoimmune disease. What on earth was this TV show referring to????????? >> - they are referring to AIDS. Why they say autoimmune disorder when they mean AIDS, I have no idea. There are many, many autoimmune disorders and only one of them is AIDS. Perhaps the fact that AIDS stands for Auto Immune Disorder Syndrome (I think?). But it does sort of throw some potential for a bad situation our way. I have told people before that PA is an autoimmune disease and seen the panic in their eyes. I quickly tell them it has nothing to do with AIDS. I sure wish the general public was a little more educated in the medical field. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2001 Report Share Posted May 11, 2001 In a message dated 5/10/01 9:16:12 PM Pacific Daylight Time, lschroe3@... writes: > Also.....did any of our stateside people watch West Wing last night? A > reference was made by a lawyer (on the show!) about asking anyone who has > an autoimmune disease if they have ever been unfaithful outside marriage > and this is supposedly, a first line question asked by all doctors when > someone has an autoimmune disease. What on earth was this TV show > referring to????????? I have never been asked that question and cannot > figure why it would be relevant? NEVER HAVE I BEEN ASKED THAT QUESTION. I CANNOT BELIEVE ANYBODY WOULD EVER THINK TO ASK IT. THE WORST PART IS-TOO MANY PEOPLE THINK TV IS A FORM OF EDUCATION AND THAT SCARES ME. AS IF IT WASN'T BAD ENOUGH DEALING WITH PEOPLE WHO DON'T UNDERSTAND OUR DISEASES NOW I AM SURE SOME WILL BE THINKING THAT WE ARE LIARS AND UNETHICAL. BEHAVIOR IS NOT A DISEASE AND I DETEST ANY TV SHOW THAT WOULD SUGGEST AN AUTOIMMUNE DISEASE AS SUCH! AS MY GRANDMOTHER WOULD SAY " HEAVENS, WHAT IS THIS WORLD COMING TO? " CHICAGOLAND SHARON Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2001 Report Share Posted May 13, 2001 In a message dated 5/13/01 8:48:16 AM Pacific Daylight Time, TADEL630@... writes: > - they are referring to AIDS. Why they say autoimmune disorder when > they mean AIDS, I have no idea. There are many, many autoimmune disorders > and only one of them is AIDS. Perhaps the fact that AIDS stands for Auto > Immune Disorder Syndrome (I think?). But it does sort of throw some > potential for a bad situation our way. I have told people before that PA > is > an autoimmune disease and seen the panic in their eyes. I quickly tell > them > it has nothing to do with AIDS. I sure wish the general public was a > little > more educated in the medical field. > OKAY - I UNDERSTAND NOW WHAT WAS DISCUSSED IN THE PROGRAM - HOWEVER THE WRITERS SHOULD HAVE RESEARCHED THE TITLE A LOT CLOSER SO THAT IT WOULD HAVE BEEN DIFFERENTIATED FROM OUR DISEASE. AIDS IS ABBREVIATION FOR ACQUIRED IMMUNE DISEASE SYNDROME NOT AUTO IMMUNE. WHEN THEY FIRST TOLD ME I HAD AN AUTO IMMUNE DISEASE THE FIRST THING THAT CAME TO MY MIND WAS AIDS. I WAS SO SCARED-MY HUSBAND WAS A FIREFIGHTER WHO HAD TO HELP ALL KINDS OF PEOPLE WHENEVER THERE WAS AN EMERGENCY CALL INCLUDING THOSE WITH AIDS. I DON''T EXACTLY REMEMBER HOW I LEARNED THE DIFFERENCE BECAUSE I WAS TOO SCARED TO TALK TO ANYBODY ABOUT IT. BUT LEARN I DID. UNTIL THIS POST I TOTALLY FORGOT ABOUT THAT MISUNDERSTANDING. AND CONSIDERING IT WAS SO TRAUMATIC I'M SURPRISED I DID FORGET. JUST GOES TO SHOW WHAT CONSISTENT PAIN CAN HELP YOU FORGET?? THE EASIEST WAY TO DISTINGUISH BETWEEN THE TWO IS AUTO IMMUNE DISEASE IS NOT SPREAD BY CONTACT AND ACQUIRED IMMUNE DISEASE IS SPREAD THROUGH CONTACT. HOPE THIS HELPS EVERYBODY WHO IS NEWLY DIAGNOSED. BE NOT AFRAID OF THE DIAGNOSIS!!!!!!!! HAVE A GREAT DAY TODAY AND TOMORROW ETC ETC ETC CHICAGOLAND SHARON Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2001 Report Share Posted May 13, 2001 No idea . I saw it too, but didn't relate to it. But I do remember the scene. Rev. Mitch McVeigh St. 's Presbyterian Church, Aurora, ON Rev.Mitch@... ICQ 5055914 P.S. Don't forget to visit the Hunger Site today and every day. Every time you do you feed a few hungry people somewhere in the world. http://www.thehungersite.com While you are at it, don't forget to click onto the Rainforest site, the Kids AIDS site, the Child Survivor Site, Breast Cancer site, and the Landmines site. Help is only a click away! http://www.Christssafetynet.com my SAFE site for kids who love Christ and want to enjoy the internet without worrying about inappropriate banners and adds. http://www.geocities.com/Heartland/Shores/6710/index.html my personal website Have a virus? Check http://www.antivirus.cai.com ITS FREE and WORKS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2001 Report Share Posted May 13, 2001 Actually I don't think AIDS is an autoimmune disorder. It is a virus -.....AIDS stands for Acquired Immune Deficiency Syndrome. So if they called AIDS an autoimmunie disorder they are incorrect. Ada Re: [ ] Exercise Questions In a message dated 05/11/2001 12:15:53 AM Eastern Daylight Time, lschroe3@... writes: << asking anyone who has an autoimmune disease if they have ever been unfaithful outside marriage and this is supposedly, a first line question asked by all doctors when someone has an autoimmune disease. What on earth was this TV show referring to????????? >> - they are referring to AIDS. Why they say autoimmune disorder when they mean AIDS, I have no idea. There are many, many autoimmune disorders and only one of them is AIDS. Perhaps the fact that AIDS stands for Auto Immune Disorder Syndrome (I think?). But it does sort of throw some potential for a bad situation our way. I have told people before that PA is an autoimmune disease and seen the panic in their eyes. I quickly tell them it has nothing to do with AIDS. I sure wish the general public was a little more educated in the medical field. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2001 Report Share Posted May 13, 2001 on 5/11/01 12:50 PM, TADEL630@... at TADEL630@... wrote: > In a message dated 05/11/2001 12:15:53 AM Eastern Daylight Time, > lschroe3@... writes: > > << asking anyone who has an autoimmune disease if they have ever been > unfaithful outside marriage and this is supposedly, a first line question > asked by all doctors when someone has an autoimmune disease. What on earth > was this TV show referring to????????? >> > > - they are referring to AIDS. Why they say autoimmune disorder when > they mean AIDS, I have no idea. There are many, many autoimmune disorders > and only one of them is AIDS. Perhaps the fact that AIDS stands for Auto > Immune Disorder Syndrome (I think?). But it does sort of throw some > potential for a bad situation our way. I have told people before that PA is > an autoimmune disease and seen the panic in their eyes. I quickly tell them > it has nothing to do with AIDS. I sure wish the general public was a little > more educated in the medical field. > > It looks to me like people need to learn a lot more...and not only about arthritis. HIV can NOT be caught through casual contact either. And based on the information out there, the jury is still out on whether or not many forms of arthritis are auto immune disorders or infections caused by mycoplasms (freaky cross breeds of bacteria and viruses). Until more research is available we'll just have to keep being patient, learn more about our disease and help others become more informed. deano Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2001 Report Share Posted May 14, 2001 In a message dated 05/14/2001 12:21:11 AM Eastern Daylight Time, momscmbc@... writes: << THE EASIEST WAY TO DISTINGUISH BETWEEN THE TWO IS AUTO IMMUNE DISEASE IS NOT SPREAD BY CONTACT AND ACQUIRED IMMUNE DISEASE IS SPREAD THROUGH CONTACT. HOPE THIS HELPS EVERYBODY WHO IS NEWLY DIAGNOSED. >> Sharon - Sorry, you are right, it's AutoImmune for AIDS - that is a good way to explain to people who get a little weirded out though - PA is autoimmune, not spread thru contact, whereas autoimmune like AIDS is. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2001 Report Share Posted May 14, 2001 In a message dated 05/14/2001 1:06:30 AM Eastern Daylight Time, adabeth@... writes: << AIDS stands for Acquired Immune Deficiency Syndrome. >> hmm - now I'm confused about what the A really stands for, but oh well! LOL I still think that's what the show in question was referring to and why didn't they just say AIDS?? It still bothers me that they would ask if someone with " AUTOimmune " is faithful - when our disease certainly isn't contagious. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 Collen, perhaps you and your doctor can work together and find a PT program, geared to your specific needs. My PTs were instrumental in teaching me about slow, repetitive stuff. The best place for me is in Aquatics - have done it for about a year now and love it. Built up muscle I lost from surgery. The whole concept is to go slow and go for strength, not endurance. I walk my dogs but that is different, since I am more concerned with them and not focused on me. When the weather's good I also bike - again, in moderation. But this is just me. Once I nixed the sugar and caffeine totally, and got into Aquatics, I felt like a new life had started, plus I had more energy. Here's a link from our Files FYI /files/Exercise%20and%20CMT/ ~ Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2003 Report Share Posted September 18, 2003 In a message dated 9/17/2003 10:39:28 AM Pacific Daylight Time, colflower1959@... writes: > I am not > giving excuses. I had just lost 170 lbs. during the progression and > diagnosis of my disease due to change in poor dietary habits and > walking. But the pain and weakness got so bad, I finally saw > doctors, and had to stop most of what I was doing, unfortunately. > Now I WANT to be active, but it makes me worse. Any help?? > I completely understand what you are saying. No One with CMT would accuse you of making excuses. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2003 Report Share Posted September 19, 2003 Gretchen I took a look at the link you posted on exercise with CMT, and did a little search on a Dr. Kilmer, one of the authors of one of the articles provided there. I thought maybe others might want to see what I found. Seems Dr. Kilmer is still investigating this topic, and may be contacted via phone or email, if anyone is interested. Here is the link where I found the info http://www.rehabinfo.net/rrtc/programoverview/exercisediet.asp For those of you who are confused about what type of exercise you CAN do with YOUR CMT, check it out. For those of you who have trouble managing your weight with CMT, check it out. Joyce S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2003 Report Share Posted September 19, 2003 Wow Joyce, you are good! I just emailed Dr. Kilmer to find out more. I didn't realize he was still investigating the exercise/diet topic. ~ Gretchen > I thought maybe others might want to see what I found. > Seems Dr. Kilmer is still investigating this topic, > and may be contacted via phone or email, if anyone is > interested. Here is the link where I found the info > http://www.rehabinfo.net/rrtc/programoverview/exercisediet.asp Quote Link to comment Share on other sites More sharing options...
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