Guest guest Posted September 10, 2002 Report Share Posted September 10, 2002 Dear Friends, lurkers and dissenters, I first would like to thank those who have stood by me with all of my symptoms and problems for the past year and for those whose posts helped during the 2 year time prior, where I lurked when I could not accept the diagnosis of MSA. I don’t know what I would have done without all of the unselfish outpouring of love and kindness. Since I have found out definitively that I do not have a PD+ disorder, thanks to the conclusive accuracy of the F-DOPA PET and the FDG PET scans, I feel that I have nothing left to give this group that would be of any benefit. Let me say that I would not have found the place to have these scans if it had not been for Pam Bower and Al. I cannot begin to tell you how this has changed my life, for the better, knowing for sure what I don’t have. I only wish that I had known where I could go sooner so that so much suffering would not have had to take place. I also feel the need to let you know that I still have all of the symptoms that I had before that led all the MDS’s to Dx me with MSA. I still fight the same battles as you do only now, the name of my disorder is once again unknown. It is because of this and the fact that stress makes my symptoms worse that I must remove myself from this group so that I can properly take care of my health. The dissention that some feel that they must put towards me is not helping me physically or emotionally and for that matter, I cannot see how others who need understanding and support could possibly benefit from it either. I don’t want anyone to ever have to go through what I have and that is why I have let others know that there IS a definitive test out there to show not only if you do or don’t have a PD+ disorder but it will actually show what type you have if you do in fact have one. You do not have to wait until autopsy to find out. The PET scan is cutting edge technology which I am certain will one day be used as frequently as a MRI or CT scan. I have found insurance companies who will pay for the PET including Medicare in some states. Until we the consumer are aware of this device and its abilities and start demanding that our doctors use this technology, the cost will be beyond the means of most,( $2100 out of pocket can be quite prohibitive for most), and proper care and treatment might be withheld because some, not all, of our physicians stoic convictions that it is not needed. The dissenters on this group have their right to speech to say what they feel they must as do I. I, the patient who remains ill and fights for each day, cannot keep up with the stress that this causes me and the negative effect it has on me. People once thought the earth was flat too. I guess that after countless, needless suffering goes on from others and the technology is more readily available, that this debate will continue but at a price. There will come the day that you will look back and see the message that I tried to convey. I hope others will not wait until this time to look back and have regrets. It is only out of compassion and love that I have tried to educate you that this technology exists NOW and that there is another option other than autopsy. It is up to each of you to see what is in your heart and decide whether this is something that you want to pursue or not. I pray that others will and whether or not it turns out that they do indeed have a PD+ disorder, I pray that the results will lead to them being treated correctly. Let me say something else, I DO NOT advocate that anyone stop taking the medications that their doctors have prescribed for them. I don’t know how this assumption ever got started but let’s put that to rest too. For those who trust their doctors, know that I trusted mine too! I trusted that I did have PD and then I trusted that I did have MSA then I trusted that the DBS would work for my rigidity and Bradykinesia and I trusted that I didn’t need the PET scans because I trusted their clinical observation and time progression analysis of my disorder. ALL WERE WRONG! I don’t live in a bubble and I know that I am not the only one who is having this happen to them. Enough said, you know what was in my heart and you know that I was only trying to help others as others have tried to help me. Understand that I care very much for all of you but I lack the physical fortitude to defend every word that I utter. My health is more important and anything that is destructive to that must stop. So with that, I say good-bye and I wish you the best in your daily battle to overcome such horrible diseases. Sincerely, Deborah aka Tenacity But for the grace of God, Go I! _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2002 Report Share Posted September 10, 2002 Dear Deborah, It grieves me that you feel you must go as I think you can still offer much to this group. You are quite right though to remove yourself from negativity. I was looking forward to reading the note you were preparing on PET scans, if you still have it in whatever state of completeness please send it to me privately. I'd also like to contact the doctors at Long Island Hospital who did your scans so they might explain to us more fully what these type of scans show... but perhaps this was part of what you were in the process of preparing? Hugs, Pam Tenacity Saying Goodbye > Dear Friends, lurkers and dissenters, > > I first would like to thank those who have stood by me with all of my > symptoms and problems for the past year and for those whose posts helped > during the 2 year time prior, where I lurked when I could not accept the > diagnosis of MSA. I don't know what I would have done without all of the > unselfish outpouring of love and kindness. > > Since I have found out definitively that I do not have a PD+ disorder, > thanks to the conclusive accuracy of the F-DOPA PET and the FDG PET scans, I > feel that I have nothing left to give this group that would be of any > benefit. Let me say that I would not have found the place to have these > scans if it had not been for Pam Bower and Al. I cannot begin to tell you > how this has changed my life, for the better, knowing for sure what I don't > have. I only wish that I had known where I could go sooner so that so much > suffering would not have had to take place. > > I also feel the need to let you know that I still have all of the > symptoms that I had before that led all the MDS's to Dx me with MSA. I > still fight the same battles as you do only now, the name of my disorder is > once again unknown. It is because of this and the fact that stress makes my > symptoms worse that I must remove myself from this group so that I can > properly take care of my health. The dissention that some feel that they > must put towards me is not helping me physically or emotionally and for that > matter, I cannot see how others who need understanding and support could > possibly benefit from it either. > > I don't want anyone to ever have to go through what I have and that is > why I have let others know that there IS a definitive test out there to show > not only if you do or don't have a PD+ disorder but it will actually show > what type you have if you do in fact have one. You do not have to wait > until autopsy to find out. The PET scan is cutting edge technology which I > am certain will one day be used as frequently as a MRI or CT scan. I have > found insurance companies who will pay for the PET including Medicare in > some states. > > Until we the consumer are aware of this device and its abilities and start > demanding that our doctors use this technology, the cost will be beyond the > means of most,( $2100 out of pocket can be quite prohibitive for most), and > proper care and treatment might be withheld because some, not all, of our > physicians stoic convictions that it is not needed. > > The dissenters on this group have their right to speech to say what they > feel they must as do I. I, the patient who remains ill and fights for each > day, cannot keep up with the stress that this causes me and the negative > effect it has on me. People once thought the earth was flat too. I guess > that after countless, needless suffering goes on from others and the > technology is more readily available, that this debate will continue but at > a price. There will come the day that you will look back and see the > message that I tried to convey. I hope others will not wait until this time > to look back and have regrets. > > It is only out of compassion and love that I have tried to educate you > that this technology exists NOW and that there is another option other than > autopsy. It is up to each of you to see what is in your heart and decide > whether this is something that you want to pursue or not. I pray that > others will and whether or not it turns out that they do indeed have a PD+ > disorder, I pray that the results will lead to them being treated correctly. > Let me say something else, I DO NOT advocate that anyone stop taking the > medications that their doctors have prescribed for them. I don't know how > this assumption ever got started but let's put that to rest too. > > For those who trust their doctors, know that I trusted mine too! I > trusted that I did have PD and then I trusted that I did have MSA then I > trusted that the DBS would work for my rigidity and Bradykinesia and I > trusted that I didn't need the PET scans because I trusted their clinical > observation and time progression analysis of my disorder. ALL WERE WRONG! > I don't live in a bubble and I know that I am not the only one who is having > this happen to them. > > Enough said, you know what was in my heart and you know that I was only > trying to help others as others have tried to help me. Understand that I > care very much for all of you but I lack the physical fortitude to defend > every word that I utter. My health is more important and anything that is > destructive to that must stop. So with that, I say good-bye and I wish you > the best in your daily battle to overcome such horrible diseases. > > Sincerely, > Deborah aka Tenacity > But for the grace of God, Go I! > > > > > > _________________________________________________________________ > Join the world's largest e-mail service with MSN Hotmail. > http://www.hotmail.com > > > 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 September 10, 2002 Report Share Posted September 10, 2002 Deborah, I am so sorry to see you go. I, like Pam think that you have allot to offer this group. I have to say, that I personally have learned many many things from you.This would be a better world if moss people were as brave and as smart as you are. I would also like to keep in touch personally if you would. I am very interested in what you have learned the last 2 years and what you will surely still learn in the future. I will send you a private email and give you my personal email address. Best of Wishes to you and . Darlene -- Original Message ----- To: shydrager > Sent: Tuesday, September 10, 2002 9:17 AM Subject: Tenacity Saying Goodbye > Dear Friends, lurkers and dissenters, > > I first would like to thank those who have stood by me with all of my > symptoms and problems for the past year and for those whose posts helped > during the 2 year time prior, where I lurked when I could not accept the > diagnosis of MSA. I don't know what I would have done without all of the > unselfish outpouring of love and kindness. > > Since I have found out definitively that I do not have a PD+ disorder, > thanks to the conclusive accuracy of the F-DOPA PET and the FDG PET scans, I > feel that I have nothing left to give this group that would be of any > benefit. Let me say that I would not have found the place to have these > scans if it had not been for Pam Bower and Al. I cannot begin to tell you > how this has changed my life, for the better, knowing for sure what I don't > have. I only wish that I had known where I could go sooner so that so much > suffering would not have had to take place. > > I also feel the need to let you know that I still have all of the > symptoms that I had before that led all the MDS's to Dx me with MSA. I > still fight the same battles as you do only now, the name of my disorder is > once again unknown. It is because of this and the fact that stress makes my > symptoms worse that I must remove myself from this group so that I can > properly take care of my health. The dissention that some feel that they > must put towards me is not helping me physically or emotionally and for that > matter, I cannot see how others who need understanding and support could > possibly benefit from it either. > > I don't want anyone to ever have to go through what I have and that is > why I have let others know that there IS a definitive test out there to show > not only if you do or don't have a PD+ disorder but it will actually show > what type you have if you do in fact have one. You do not have to wait > until autopsy to find out. The PET scan is cutting edge technology which I > am certain will one day be used as frequently as a MRI or CT scan. I have > found insurance companies who will pay for the PET including Medicare in > some states. > > Until we the consumer are aware of this device and its abilities and start > demanding that our doctors use this technology, the cost will be beyond the > means of most,( $2100 out of pocket can be quite prohibitive for most), and > proper care and treatment might be withheld because some, not all, of our > physicians stoic convictions that it is not needed. > > The dissenters on this group have their right to speech to say what they > feel they must as do I. I, the patient who remains ill and fights for each > day, cannot keep up with the stress that this causes me and the negative > effect it has on me. People once thought the earth was flat too. I guess > that after countless, needless suffering goes on from others and the > technology is more readily available, that this debate will continue but at > a price. There will come the day that you will look back and see the > message that I tried to convey. I hope others will not wait until this time > to look back and have regrets. > > It is only out of compassion and love that I have tried to educate you > that this technology exists NOW and that there is another option other than > autopsy. It is up to each of you to see what is in your heart and decide > whether this is something that you want to pursue or not. I pray that > others will and whether or not it turns out that they do indeed have a PD+ > disorder, I pray that the results will lead to them being treated correctly. > Let me say something else, I DO NOT advocate that anyone stop taking the > medications that their doctors have prescribed for them. I don't know how > this assumption ever got started but let's put that to rest too. > > For those who trust their doctors, know that I trusted mine too! I > trusted that I did have PD and then I trusted that I did have MSA then I > trusted that the DBS would work for my rigidity and Bradykinesia and I > trusted that I didn't need the PET scans because I trusted their clinical > observation and time progression analysis of my disorder. ALL WERE WRONG! > I don't live in a bubble and I know that I am not the only one who is having > this happen to them. > > Enough said, you know what was in my heart and you know that I was only > trying to help others as others have tried to help me. Understand that I > care very much for all of you but I lack the physical fortitude to defend > every word that I utter. My health is more important and anything that is > destructive to that must stop. So with that, I say good-bye and I wish you > the best in your daily battle to overcome such horrible diseases. > > Sincerely, > Deborah aka Tenacity > But for the grace of God, Go I! > > > > > > _________________________________________________________________ > Join the world's largest e-mail service with MSN Hotmail. > http://www.hotmail.com > > > 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 September 11, 2002 Report Share Posted September 11, 2002 Pam: I think your idea of contacting the docs on Long Island is excellent. Clearly, they won't be able to discuss in detail the results of Tenacity's scan, but perhaps they can give us objective descriptions of the capabilities and limitations of these various scans. This entire discussion of scans has certainly increased the awareness of all of us about their existence. However, I for one am still confused as to when they are appropriate, and as to what their capabilities and limitations are all about. Good luck in your endeavor. Message: 10 Date: Tue, 10 Sep 2002 11:47:50 -0300 Subject: Re: Tenacity Saying Goodbye Dear Deborah, It grieves me that you feel you must go as I think you can still offer much to this group. You are quite right though to remove yourself from negativity. I was looking forward to reading the note you were preparing on PET scans, if you still have it in whatever state of completeness please send it to me privately. I'd also like to contact the doctors at Long Island Hospital who did your scans so they might explain to us more fully what these type of scans show... but perhaps this was part of what you were in the process of preparing? Hugs, Pam Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 Congratulations Deborah. Whatever some may say, you will never really be gone. Someone like you will always be in the minds of many people, even those who didn't agree with you. I hope they are bright enough to understand and perhaps learn some little thing, from what has taken place, as well as learning what a patient and tremendously strong person you must be. I know you will always be in my mind and will have not had our last chat. Bill Pilgrim -- Tenacity Saying Goodbye Dear Friends, lurkers and dissenters,I first would like to thank those who have stood by me with all of my symptoms and problems for the past year and for those whose posts helped during the 2 year time prior, where I lurked when I could not accept the diagnosis of MSA. I don’t know what I would have done without all of the unselfish outpouring of love and kindness.Since I have found out definitively that I do not have a PD+ disorder, thanks to the conclusive accuracy of the F-DOPA PET and the FDG PET scans, I feel that I have nothing left to give this group that would be of any benefit. Let me say that I would not have found the place to have these scans if it had not been for Pam Bower and Al. I cannot begin to tell you how this has changed my life, for the better, knowing for sure what I don’t have. I only wish that I had known where I could go sooner so that so much suffering would not have had to take place.I also feel the need to let you know that I still have all of the symptoms that I had before that led all the MDS’s to Dx me with MSA. I still fight the same battles as you do only now, the name of my disorder is once again unknown. It is because of this and the fact that stress makes my symptoms worse that I must remove myself from this group so that I can properly take care of my health. The dissention that some feel that they must put towards me is not helping me physically or emotionally and for that matter, I cannot see how others who need understanding and support could possibly benefit from it either.I don’t want anyone to ever have to go through what I have and that is why I have let others know that there IS a definitive test out there to show not only if you do or don’t have a PD+ disorder but it will actually show what type you have if you do in fact have one. You do not have to wait until autopsy to find out. The PET scan is cutting edge technology which I am certain will one day be used as frequently as a MRI or CT scan. I have found insurance companies who will pay for the PET including Medicare in some states.Until we the consumer are aware of this device and its abilities and start demanding that our doctors use this technology, the cost will be beyond the means of most,( $2100 out of pocket can be quite prohibitive for most), and proper care and treatment might be withheld because some, not all, of our physicians stoic convictions that it is not needed.The dissenters on this group have their right to speech to say what they feel they must as do I. I, the patient who remains ill and fights for each day, cannot keep up with the stress that this causes me and the negative effect it has on me. People once thought the earth was flat too. I guess that after countless, needless suffering goes on from others and the technology is more readily available, that this debate will continue but at a price. There will come the day that you will look back and see the message that I tried to convey. I hope others will not wait until this time to look back and have regrets.It is only out of compassion and love that I have tried to educate you that this technology exists NOW and that there is another option other than autopsy. It is up to each of you to see what is in your heart and decide whether this is something that you want to pursue or not. I pray that others will and whether or not it turns out that they do indeed have a PD+ disorder, I pray that the results will lead to them being treated correctly. Let me say something else, I DO NOT advocate that anyone stop taking the medications that their doctors have prescribed for them. I don’t know how this assumption ever got started but let’s put that to rest too.For those who trust their doctors, know that I trusted mine too! I trusted that I did have PD and then I trusted that I did have MSA then I trusted that the DBS would work for my rigidity and Bradykinesia and I trusted that I didn’t need the PET scans because I trusted their clinical observation and time progression analysis of my disorder. ALL WERE WRONG! I don’t live in a bubble and I know that I am not the only one who is having this happen to them.Enough said, you know what was in my heart and you know that I was only trying to help others as others have tried to help me. Understand that I care very much for all of you but I lack the physical fortitude to defend every word that I utter. My health is more important and anything that is destructive to that must stop. So with that, I say good-bye and I wish you the best in your daily battle to overcome such horrible diseases.Sincerely,Deborah aka TenacityBut for the grace of God, Go I!_________________________________________________________________Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.comIf 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...
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