Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 No answer yet, from Dr. Baughman - How long should I wait before I assume he didn't get my mail? I'm glad you like him - maybe we will too... I don't know how in the world we could come up with the money to travel to see him, though. Thanks again, Love, Jeri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 Thanks - I had it from last time too. I'll call. Love, Jeri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 I had to many ones in the number. Sharon Re: Attn: Sharon No answer yet, from Dr. Baughman - How long should I wait before I assume he didn't get my mail?I'm glad you like him - maybe we will too... I don't know how in the world we could come up with the money to travel to see him, though.Thanks again,Love,Jeri~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 I know this sounds soooooooooooooo corney but why dont we asa group write to like ohpra tell them how wonderful jeri and greg are and how bad he needs to do this maybe they will fund it. Duffy that revlon model was on her show discussing this disease what do we have to loose? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 I'm speechless! What a nice thought! :-) Thanks! Love, Jeri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 Nothing. I am not that great a writer. It needs to be very eloquent and to the point. I got my Reader's Digest and I am furious. It listed the top 10 missed diagnosed diseases and Sarcoidosis was not listed. I may write to Reader's Digest about us as well. Sharon Re: Attn: Sharon I know this sounds soooooooooooooo corney but why dont we asa group write to like ohpra tell them how wonderful jeri and greg are and how bad he needs to do this maybe they will fund it. Duffy that revlon model was on her show discussing this disease what do we have to loose? ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 Nothing. I am not that great a writer. It needs to be very eloquent and to the point. I got my Reader's Digest and I am furious. It listed the top 10 missed diagnosed diseases and Sarcoidosis was not listed. I may write to Reader's Digest about us as well. Sharon Re: Attn: Sharon I know this sounds soooooooooooooo corney but why dont we asa group write to like ohpra tell them how wonderful jeri and greg are and how bad he needs to do this maybe they will fund it. Duffy that revlon model was on her show discussing this disease what do we have to loose? ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 Montel has MS. Do you think someone on list could get ahold of him? Maybe he could have a show about NS? Shirley Re: Attn: Sharon I know this sounds soooooooooooooo corney but why dont we asa group write to like ohpra tell them how wonderful jeri and greg are and how bad he needs to do this maybe they will fund it. Duffy that revlon model was on her show discussing this disease what do we have to loose? ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 Montel is a lot more sensitive I feel and would do al lot of research as well. Sharon Re: Attn: Sharon I know this sounds soooooooooooooo corney but why dont we asa group write to like ohpra tell them how wonderful jeri and greg are and how bad he needs to do this maybe they will fund it. Duffy that revlon model was on her show discussing this disease what do we have to loose? ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 Nothing, Great Idea!! Mb -----Original Message-----From: casmar38@... Sent: Saturday, January 17, 2004 8:32 AMTo: Neurosarcoidosis Subject: Re: Attn: SharonI know this sounds soooooooooooooo corney but why dont we asa group write to like ohpra tell them how wonderful jeri and greg are and how bad he needs to do this maybe they will fund it. Duffy that revlon model was on her show discussing this disease what do we have to loose? ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 Nothing, Great Idea!! Mb -----Original Message-----From: casmar38@... Sent: Saturday, January 17, 2004 8:32 AMTo: Neurosarcoidosis Subject: Re: Attn: SharonI know this sounds soooooooooooooo corney but why dont we asa group write to like ohpra tell them how wonderful jeri and greg are and how bad he needs to do this maybe they will fund it. Duffy that revlon model was on her show discussing this disease what do we have to loose? ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 Nothing, Great Idea!! Mb -----Original Message-----From: casmar38@... Sent: Saturday, January 17, 2004 8:32 AMTo: Neurosarcoidosis Subject: Re: Attn: SharonI know this sounds soooooooooooooo corney but why dont we asa group write to like ohpra tell them how wonderful jeri and greg are and how bad he needs to do this maybe they will fund it. Duffy that revlon model was on her show discussing this disease what do we have to loose? ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2004 Report Share Posted January 18, 2004 Sharon, I was interested to see Polycystic Ovary Syndrome listed, which is what Sam has. Diagnosed right off by our wonderful Women's Health nurse practitioner! Rose Re: Attn: Sharon I know this sounds soooooooooooooo corney but why dont we asa group write to like ohpra tell them how wonderful jeri and greg are and how bad he needs to do this maybe they will fund it. Duffy that revlon model was on her show discussing this disease what do we have to loose? ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2004 Report Share Posted January 18, 2004 Sharon, I was interested to see Polycystic Ovary Syndrome listed, which is what Sam has. Diagnosed right off by our wonderful Women's Health nurse practitioner! Rose Re: Attn: Sharon I know this sounds soooooooooooooo corney but why dont we asa group write to like ohpra tell them how wonderful jeri and greg are and how bad he needs to do this maybe they will fund it. Duffy that revlon model was on her show discussing this disease what do we have to loose? ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 I dont have any boobs worthy of showing but I'll do anything else.......................lol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 we could get on several, if one of you, and you noticed I said you, were willing to show your boobs!!! shirley Re: Attn: Sharon I will gather info look it up research whatever I have to to try and get some media attention. Have you watched what these talk gave away at christmas surely they can help some people in this group. I will keep u posted ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 Sharon I missed the original message what is this about a cyst? I had my right ovary hemmorage last year and wound up loosing it could this be sarc? or part of Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 That is one of many that was listed, but there are so many more. I had what they called a Chocolate Cyst on the left ovary. I was hemorrhaging. It is no fun and she is so young. Sharon Re: Attn: Sharon I know this sounds soooooooooooooo corney but why dont we asa group write to like ohpra tell them how wonderful jeri and greg are and how bad he needs to do this maybe they will fund it. Duffy that revlon model was on her show discussing this disease what do we have to loose? ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2004 Report Share Posted January 19, 2004 Stern is out, and so is Jerry Springer. Sharon Re: Attn: Sharon I will gather info look it up research whatever I have to to try and get some media attention. Have you watched what these talk gave away at christmas surely they can help some people in this group. I will keep u posted ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2004 Report Share Posted January 20, 2004 I'm 46 and overweight, but I'll be happy to show my boobs if it will get us some HELP!! Love, Jeri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2004 Report Share Posted January 20, 2004 Oh, and Gregg says he will show his - no problem! LOL Love, Jeri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2004 Report Share Posted January 20, 2004 My ovary was never checked for Sarcoidosis, but now I am thinking it was Sarcoid. No one was looking for it. Sharon Re: Attn: Sharon Sharon I missed the original message what is this about a cyst? I had my right ovary hemmorage last year and wound up loosing it could this be sarc? or part ofKim ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2004 Report Share Posted January 20, 2004 My ovary was never checked for Sarcoidosis, but now I am thinking it was Sarcoid. No one was looking for it. Sharon Re: Attn: Sharon Sharon I missed the original message what is this about a cyst? I had my right ovary hemmorage last year and wound up loosing it could this be sarc? or part ofKim ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
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