Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 Enter your vote today! A new poll has been created for the shydrager group: BACKGROUND: " In 1969, Graham and Oppenheimer coined the term multiple system atrophy (MSA) to combine the common features seen in the Shy-Drager Syndrome (SDS), Striatonigral Degeneration(SND) and Sporadic Olivopontocerebellar atrophy (OPCA). The " consensus statement on the diagnosis of multiple system atrophy " in 1999 recommended the use of MSA-P to replace SND, and MSA-C for sporadic OPCA. The consensus group also concluded that the term Shy-Drager syndrome is no longer useful. " It's been suggested that since the term Shy-Drager Syndrome is no longer recognized by the consensus committee that our group/list name be changed as well. POLL QUESTION: Would you be in favor of changing the group's name from " shydrager " to " MultipleSystemAtrophy " or something similar? o Yes, Strongly in favor of a name change o Yes, Somewhat in favor of a name change o Don't care one way or the other o No, Somewhat opposed to a name change o No, Strongly opposed to a name change To vote, please visit the following web page: http://groups.yahoo.com/group/shydrager/surveys?id=950676 Note: Please do not reply to this message. Poll votes are not collected via email. To vote, you must go to the Yahoo! Groups web site listed above. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 Note I edited this slightly and added another sentence: The consensus group also concluded that the term Shy-Drager syndrome is no longer useful. " Instead, it was their opinion that the autonomic and/or urinary symptoms of Shy-Drager Syndrome were included under both MSA-P and MSA-C. Regards, Pam New poll for shydrager Enter your vote today! A new poll has been created for the shydrager group: BACKGROUND: " In 1969, Graham and Oppenheimer coined the term multiple system atrophy (MSA) to combine the common features seen in the Shy-Drager Syndrome (SDS), Striatonigral Degeneration(SND) and Sporadic Olivopontocerebellar atrophy (OPCA). The " consensus statement on the diagnosis of multiple system atrophy " in 1999 recommended the use of MSA-P to replace SND, and MSA-C for sporadic OPCA. The consensus group also concluded that the term Shy-Drager syndrome is no longer useful. " It's been suggested that since the term Shy-Drager Syndrome is no longer recognized by the consensus committee that our group/list name be changed as well. POLL QUESTION: Would you be in favor of changing the group's name from " shydrager " to " MultipleSystemAtrophy " or something similar? o Yes, Strongly in favor of a name change o Yes, Somewhat in favor of a name change o Don't care one way or the other o No, Somewhat opposed to a name change o No, Strongly opposed to a name change To vote, please visit the following web page: http://groups.yahoo.com/group/shydrager/surveys?id=950676 Note: Please do not reply to this message. Poll votes are not collected via email. To vote, you must go to the Yahoo! Groups web site listed above. Thanks! If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2002 Report Share Posted July 31, 2002 Pam and all, While I am in favor of changing the name also, I have STRONG reservations about a complete name change. For the following reasons I am uncertain it should be changed: (1) It has been over 2 years since we changed the last time and we STILL have inquiries at the old Vanderbilt site. To my knowledge, Pam and I are the only ones trying to redirect messages to this site. (2) Many doctors STILL call it Shy-Drager Syndrome which causes confusion. Actually, we even see PAF called Shy-Drager Syndrome today. It does NOT bother me to see other brain disorder patients and caregivers on this list, but it does cause confusion and we MUST make sure we qualify our emails. We have many DIFFERENT symptoms on this list and there is NO one treatment for everyone on the list. Remember that what helps one person on this list, may be harmful to others - keeping this in mind - we MUST allow people to correct general statements without jumping on them about hurting feelings. Feelings can be mended, but a heart attack can NOT always be mended. (3) As Pam mentioned, the bookmarks are a great help to us all and MUST be preserved. They are a great help to many people and a place to check out differences of opinion. (4) The email archive is also important. We have now probably lost the old archives from Vanderbilt as Jeff Millman has dropped out of the picture. This is also a valuable resource (and more people need to learn to use it). (5) Finally there are doctors who feel strongly that MSA is too cold a name. This may be why they still call it SDS, but we need some clarification on PAF vs. SDS, a few of us understand the difference at least in practice, but it is confusing when some doctors still call PAF - Shy-Drager. I still feel the BEST solution is to make it clear that MSA and SDS are the same thing (or at least MSA-A is). Our write up on the website is now clear on that so that part is NOT a problem. Could the name of the site be changed to http://groups.yahoo.com/group/shydrager(MSA) withour a lot of hassle? I do NOT feel that anything which creates a LOT of work is worth the effort. Actually we have people on the list now with MSA (all forms), PAF, CBGD, POTS, LBD, OH, possibly PSP and I am sure others - maybe even chiari. I am NOT in favor of making this an exclusive site as the general caregiving info works for all patients, not just MSA. We now have over 40 members in the DC support group and they are as diverse as this list, BUT we still help each other which is the primary purpose of this site. Remember that your doctor should be your primary source of treatment - WE ONLY offer suggestions on what has worked (and we should qualify our notes on meds id we have a probable or even possible diagnoses). Them's my thoughts ) I'm a relative newcomer compared to many on this list at almost 3.5 years. Take care, Bill Werre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2002 Report Share Posted August 1, 2002 I have tried to log on to vote but keep being told I am not a member of shydrager. I thought I was. JILL New poll for shydrager Enter your vote today! A new poll has been created for the shydrager group: BACKGROUND: " In 1969, Graham and Oppenheimer coined the term multiple system atrophy (MSA) to combine the common features seen in the Shy-Drager Syndrome (SDS), Striatonigral Degeneration(SND) and Sporadic Olivopontocerebellar atrophy (OPCA). The " consensus statement on the diagnosis of multiple system atrophy " in 1999 recommended the use of MSA-P to replace SND, and MSA-C for sporadic OPCA. The consensus group also concluded that the term Shy-Drager syndrome is no longer useful. " It's been suggested that since the term Shy-Drager Syndrome is no longer recognized by the consensus committee that our group/list name be changed as well. POLL QUESTION: Would you be in favor of changing the group's name from " shydrager " to " MultipleSystemAtrophy " or something similar? o Yes, Strongly in favor of a name change o Yes, Somewhat in favor of a name change o Don't care one way or the other o No, Somewhat opposed to a name change o No, Strongly opposed to a name change To vote, please visit the following web page: http://groups.yahoo.com/group/shydrager/surveys?id=950676 Note: Please do not reply to this message. Poll votes are not collected via email. To vote, you must go to the Yahoo! Groups web site listed above. Thanks! If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2002 Report Share Posted August 3, 2002 Hope this is what you are looking for. Jean & Chrissie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2002 Report Share Posted August 5, 2002 I, too am having trouble voting in the poll. After filling out an entire page of info, was told "page wasn't responding". Very frustrating. bvpond Quote Link to comment Share on other sites More sharing options...
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