Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 Hello, Welcome. I am so sorry to hear that you are having difficulty with a diagnosis. You asked 'where can we get the best information', and I would suggest three things. -First, please stay with this group, because there are close to 600 LBD caregivers here willing to share their knowledge and offer support. If you feel comfortable describing your observations of LBD symptoms, I'm sure you will find many people that can relate to what your LO is experiencing. -Second, the www.lewybodydementia.org website contains a wealth of information, including links to other medical sites. -Third, but most important, is to seek a another opinion. A thorough exam from a highly qualified medical team will provide your LO with a much better answer than 'dementia'. Although an absolute diagnosis can only be determined from an autopsy, the best medical facilities now have around 90% accuracy in distinguishing between the different types of dementias. If you would like to share where you and your LO are located, there may be someone here who could recommend a doctor in your area. Another good option is to contact the closest medical university, where they will likely have an experienced diagnostic center. Based on autopsy results, it it thought that currenly only 10% of LBD people are receiving an accurate diagnosis, so you are not alone. Please stay in touch and let us know how else we can help. Take care, Peggy > The doctors have told us that our LO does not have AD, just > dementia. But he will go no further. My sister-in-law and I > believe that we are dealing with Lewy Body. I would love to know > where we can get the best information on the disease and it's > progression. Any help will be appreciated. Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Go to the LBD website and still go to your local Alzheimers association. They have some info. M > >Reply-To: LBDcaregivers >To: LBDcaregivers >Subject: Best Information? >Date: Wed, 07 Jul 2004 18:54:12 -0000 >MIME-Version: 1.0 >X-Originating-IP: 68.159.149.154 >X-Sender: rygjr1@... >Received: from n29.grp.scd.yahoo.com ([66.218.66.85]) by mc8-f8.hotmail.com >with Microsoft SMTPSVC(5.0.2195.6824); Wed, 7 Jul 2004 12:04:42 -0700 >Received: from [66.218.66.158] by n29.grp.scd.yahoo.com with NNFMP; 07 Jul >2004 18:55:34 -0000 >Received: (qmail 61656 invoked from network); 7 Jul 2004 18:55:32 -0000 >Received: from unknown (66.218.66.218) by m18.grp.scd.yahoo.com with QMQP; >7 Jul 2004 18:55:32 -0000 >Received: from unknown (HELO n24.grp.scd.yahoo.com) (66.218.66.80) by >mta3.grp.scd.yahoo.com with SMTP; 7 Jul 2004 18:55:32 -0000 >Received: from [66.218.67.250] by n24.grp.scd.yahoo.com with NNFMP; 07 Jul >2004 18:54:15 -0000 >X-Message-Info: JGTYoYF78jF6XmtdixAOStdVcCbA7jJd >X-eGroups-Return: >sentto-2141318-31704-1089226534-cat86443=hotmail.com@... >X-Apparently-To: LBDcaregivers >Message-ID: <cchgsk+9af2eGroups> >User-Agent: eGroups-EW/0.82 >X-Mailer: Yahoo Groups Message Poster >X-eGroups-Remote-IP: 66.218.66.80 >X-Yahoo-Profile: phsgirl77 >Mailing-List: list LBDcaregivers ; contact >LBDcaregivers-owner >Delivered-To: mailing list LBDcaregivers >Precedence: bulk >List-Unsubscribe: <mailto:LBDcaregivers-unsubscribe > >Return-Path: >sentto-2141318-31704-1089226534-cat86443=hotmail.com@... >X-OriginalArrivalTime: 07 Jul 2004 19:04:42.0952 (UTC) >FILETIME=[42D5C480:01C46455] > >The doctors have told us that our LO does not have AD, just >dementia. But he will go no further. My sister-in-law and I >believe that we are dealing with Lewy Body. I would love to know >where we can get the best information on the disease and it's >progression. Any help will be appreciated. Thank you > _________________________________________________________________ Get tips for maintaining your PC, notebook accessories and reviews in Technology 101. http://special.msn.com/tech/technology101.armx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 > The doctors have told us that our LO does not have AD, just > dementia. But he will go no further. My sister-in-law and I > believe that we are dealing with Lewy Body. I would love to know > where we can get the best information on the disease and it's > progression. Any help will be appreciated. Thank you Thanks to those who replied. We are doing as much reading as we can. One thing we would like to know more about is if there is a natural progression to the disease. We just are not sure where we are with this. I guess everyone feels that way most of the time. We just convinced the DR. to take her off Aricept. It was not what she needed and she was having side effects from the drug. This seems like a good place to get information. I will be back here. Quote Link to comment Share on other sites More sharing options...
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