Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Tawny, I guarantee you if you meet Flora and Doug, you'll feel encouraged. Both are just super and are a wealth of information. I do realize that you are younger than most of us when we started this PLS journey. Keep writing. G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Tawny, There you are! good for you for coming abroad. These lovely people are wonderful and a world of knowledge that most doctors don't have regarding PLS. You can spill your heart out to these people they all understand the frustration that we as PLS people have. Yes we are different in our progression but we can feel the fear of PLS , how aggressive it can get. ....................Let me know when you would like to meet, I'm just around the corner for you.....Flora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 thanks for the welcome---have registered on the data base and actually flora suggested i join this. seems i am ready one day to talk about the pls and then i go head strong and as flora can tell you, i had backed off almost as quickly as i began. am back at it and interested. i am in florida and not far from flora tho we've never met. i have gone to the website in the past but became frustrated about information there not at all matching my progression---rapid---and information i have read about life expectancies and such. since i am 35 and was 32 at onset and have been so quickly and unbelievably had difficulty just getting thru a day. i should go back and read about the connections tho and thanks. Lkgentner@... wrote: Welcome Tawny to our exclusive club. ;-) I would guess a lot of us have urinary urgency. I took Ditropan XL for a while when I was at the place that I just couldn't hold it. I then stopped and I don't have the problem as often now -- still have it but not as severe. I always remember as a kid when my mother would tell me to go to the bathroom and I'd say that I didn't need to go, she'd tell me to " just go try " and, of course, I always did go. So I use that now too. Where do you live? We're " gathering " people with PLS and HSP to be " Ambassadors " in our various states. We have PLS and HSP folks in almost every state and several countries. We encourage people to get together for (what we call) Connections. If you haven't done so already, check out our SPF website at _www.sp-foundation.org_ (http://www.sp-foundation.org) . You can also look at a database where some of us have registered. It isn't totally current but plans are in the works so get more people to register and get it updated soon. _http://www.geocities.com/freyerse/plsdb.html_ (http://www.geocities.com/freyerse/plsdb.html) Gentner, PLS Fremont, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Welcome Tawny I live in Orlando. Not dx'd with anything specific yet. Have a new neuro I have seen a couple of times and he has suggested FSP/HSP. I haven't seen him since to further discuss things. Wishing you all the best. marfla orlando Be Blessed Re: Welcome Tawny Tawny, I guarantee you if you meet Flora and Doug, you'll feel encouraged. Both are just super and are a wealth of information. I do realize that you are younger than most of us when we started this PLS journey. Keep writing. G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Flora and her husband Doug are lovely people--met them in Boston and Flora will talk to you and help you in many ways--you have found lots of friends here who will listen to you--acceptance is a big part and it's OK to take awhile to do that! We are here to help you get through that part at your pace and with lots of patience--we've been there! Sue Me > > thanks for the welcome---have registered on the data base and actually flora suggested i join this. seems i am ready one day to talk about the pls and then i go head strong and as flora can tell you, i had backed off almost as quickly as i began. am back at it and interested. i am in florida and not far from flora tho we've never met. i have gone to the website in the past but became frustrated about information there not at all matching my progression---rapid---and information i have read about life expectancies and such. since i am 35 and was 32 at onset and have been so quickly and unbelievably had difficulty just getting thru a day. i should go back and read about the connections tho and thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 hey tawny, just wanted to say welcome. i just joined a couple of months ago and am in a similar situation as you. i am 38, first started having symptoms in spring of '04, and have had rapid progression. i'm glad you have joined this group. the people are really nice and supportive and have lots of good ideas and info. sarah Welcome Tawny to our exclusive club. ;-) > > I would guess a lot of us have urinary urgency. I took Ditropan XL for a > while when I was at the place that I just couldn't hold it. I then stopped and > I don't have the problem as often now -- still have it but not as severe. I > always remember as a kid when my mother would tell me to go to the bathroom > and I'd say that I didn't need to go, she'd tell me to " just go try " and, of > course, I always did go. So I use that now too. > > Where do you live? We're " gathering " people with PLS and HSP to be > " Ambassadors " in our various states. We have PLS and HSP folks in almost every state > and several countries. We encourage people to get together for (what we > call) Connections. If you haven't done so already, check out our SPF website at > _www.sp-foundation.org_ (http://www.sp-foundation.org) . > > You can also look at a database where some of us have registered. It isn't > totally current but plans are in the works so get more people to register and > get it updated soon. > _http://www.geocities.com/freyerse/plsdb.html_ > (http://www.geocities.com/freyerse/plsdb.html) > > Gentner, PLS > Fremont, CA > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 Glad Flora pointed you our way. This is a GREAT group. I'm 52, had symptoms since '99, the docs toss out DXs like popcorn kernels on a hot fire. Neuro #20 said last month Nah that one's not right either. I got the baclofen pump to ease my walking NOT measurements yesterday list my walking 50% worse. Not the pumps fault. Now they're saying I may not even be MND. PLEASE DON'T KICK ME OUT MY FRIENDS. I couldn't have made it through the last few years without these guys. Again Welcome, Eva in Edgewater Fla. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 thanks, well, i understand about being given a million dx and then having them taken back! sorry for you as that is one of the most frustrating things ever! sorry baclofen pump not helping the walking. i would kill for a pump. i already know walking is done as i haven't been able to stand for a year or more but this pain and inablitity to function because of it and all the other meds is crazy. i have lost so much arm range of motion and hello, let's face it, arms are how i do things!!! have they done any genetic testing? they were going to do that for me initially until we watched it progress for about 9 months and then doc feels certain it is pls. keep gettingtested to make sure not als tho and that is scary. i have another 2 years of that. hang in there and again thanks for the welcome. briteeyestwo briteeyestwo@...> wrote: Glad Flora pointed you our way. This is a GREAT group. I'm 52, had symptoms since '99, the docs toss out DXs like popcorn kernels on a hot fire. Neuro #20 said last month Nah that one's not right either. I got the baclofen pump to ease my walking NOT measurements yesterday list my walking 50% worse. Not the pumps fault. Now they're saying I may not even be MND. PLEASE DON'T KICK ME OUT MY FRIENDS. I couldn't have made it through the last few years without these guys. Again Welcome, Eva in Edgewater Fla. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 thanks, well, i understand about being given a million dx and then having them taken back! sorry for you as that is one of the most frustrating things ever! sorry baclofen pump not helping the walking. i would kill for a pump. i already know walking is done as i haven't been able to stand for a year or more but this pain and inablitity to function because of it and all the other meds is crazy. i have lost so much arm range of motion and hello, let's face it, arms are how i do things!!! have they done any genetic testing? they were going to do that for me initially until we watched it progress for about 9 months and then doc feels certain it is pls. keep gettingtested to make sure not als tho and that is scary. i have another 2 years of that. hang in there and again thanks for the welcome. briteeyestwo briteeyestwo@...> wrote: Glad Flora pointed you our way. This is a GREAT group. I'm 52, had symptoms since '99, the docs toss out DXs like popcorn kernels on a hot fire. Neuro #20 said last month Nah that one's not right either. I got the baclofen pump to ease my walking NOT measurements yesterday list my walking 50% worse. Not the pumps fault. Now they're saying I may not even be MND. PLEASE DON'T KICK ME OUT MY FRIENDS. I couldn't have made it through the last few years without these guys. Again Welcome, Eva in Edgewater Fla. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 thanks, well, i understand about being given a million dx and then having them taken back! sorry for you as that is one of the most frustrating things ever! sorry baclofen pump not helping the walking. i would kill for a pump. i already know walking is done as i haven't been able to stand for a year or more but this pain and inablitity to function because of it and all the other meds is crazy. i have lost so much arm range of motion and hello, let's face it, arms are how i do things!!! have they done any genetic testing? they were going to do that for me initially until we watched it progress for about 9 months and then doc feels certain it is pls. keep gettingtested to make sure not als tho and that is scary. i have another 2 years of that. hang in there and again thanks for the welcome. briteeyestwo briteeyestwo@...> wrote: Glad Flora pointed you our way. This is a GREAT group. I'm 52, had symptoms since '99, the docs toss out DXs like popcorn kernels on a hot fire. Neuro #20 said last month Nah that one's not right either. I got the baclofen pump to ease my walking NOT measurements yesterday list my walking 50% worse. Not the pumps fault. Now they're saying I may not even be MND. PLEASE DON'T KICK ME OUT MY FRIENDS. I couldn't have made it through the last few years without these guys. Again Welcome, Eva in Edgewater Fla. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 Eva! Truth be known...maybe they are wrong about all of us! Maybe we are actually from another planet in the solar system and our neurology is just different! Who knows. But this group sure needs you Eva!! Hugs! Love Di....PLS....Canada In PLS-FRIENDS , " briteeyestwo " wrote: > > Glad Flora pointed you our way. This is a GREAT group. I'm 52, had > symptoms since '99, the docs toss out DXs like popcorn kernels on a hot > fire. Neuro #20 said last month Nah that one's not right either. I got > the baclofen pump to ease my walking NOT measurements yesterday list my > walking 50% worse. Not the pumps fault. Now they're saying I may not > even be MND. > PLEASE DON'T KICK ME OUT MY FRIENDS. > > I couldn't have made it through the last few years without these guys. > Again Welcome, > Eva in Edgewater Fla. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 Eva! Truth be known...maybe they are wrong about all of us! Maybe we are actually from another planet in the solar system and our neurology is just different! Who knows. But this group sure needs you Eva!! Hugs! Love Di....PLS....Canada In PLS-FRIENDS , " briteeyestwo " wrote: > > Glad Flora pointed you our way. This is a GREAT group. I'm 52, had > symptoms since '99, the docs toss out DXs like popcorn kernels on a hot > fire. Neuro #20 said last month Nah that one's not right either. I got > the baclofen pump to ease my walking NOT measurements yesterday list my > walking 50% worse. Not the pumps fault. Now they're saying I may not > even be MND. > PLEASE DON'T KICK ME OUT MY FRIENDS. > > I couldn't have made it through the last few years without these guys. > Again Welcome, > Eva in Edgewater Fla. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 Eva! Truth be known...maybe they are wrong about all of us! Maybe we are actually from another planet in the solar system and our neurology is just different! Who knows. But this group sure needs you Eva!! Hugs! Love Di....PLS....Canada In PLS-FRIENDS , " briteeyestwo " wrote: > > Glad Flora pointed you our way. This is a GREAT group. I'm 52, had > symptoms since '99, the docs toss out DXs like popcorn kernels on a hot > fire. Neuro #20 said last month Nah that one's not right either. I got > the baclofen pump to ease my walking NOT measurements yesterday list my > walking 50% worse. Not the pumps fault. Now they're saying I may not > even be MND. > PLEASE DON'T KICK ME OUT MY FRIENDS. > > I couldn't have made it through the last few years without these guys. > Again Welcome, > Eva in Edgewater Fla. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 Tawny, if you live just around the corner from Flora, then you are a very lucky person indeed!! I live in Australia but Flora has helped me many many times during my freaking out periods, by email. Aussie Maureen > > Tawny, > > I guarantee you if you meet Flora and Doug, you'll feel encouraged. Both > are just super and are a wealth of information. I do realize that you are > younger than most of us when we started this PLS journey. Keep writing. > > G. > > > Quote Link to comment Share on other sites More sharing options...
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