Guest guest Posted April 23, 2006 Report Share Posted April 23, 2006 Hi Jill, I can't imagine how you all feel - bad enough getting it in your late 30's as many of us have, but not so young. In fact, from what I know that is extremely young to get PLS and also it sounds like her progression has been relatively rapid for PLS eg. losing the use of her hand already. Given there has only just been a test developed which may confirm a diagnosis of a motor neurone disease such as PLS I assume she hasn't had it, so how confident can you be in the diagnosis? What I am getting at in particular is have you investigated the possibility of things like Lyme Disease (LD)? If not that is something I would definitely want to investigate further because it can mimic so many other conditions and IS treatable. Someone else on here who has suffered terribly with his PLS recently was re-diagnosed with LD and is now on treatment which hopefully will eventually regain him a lot of lost ground. Jill Kirscher wrote: > Hi. I am new to this group. I have a daughter that has been > diagnosed with > PLS. She is only 24 and is 2 ½ years into her symptoms. It took the > doctors at UCSF a year and a half to diagnose her. She hangs onto the > hope > that one day if she works hard enough at her physical therapyshe will be > able to run again and move her hand again. She was an athlete and enjoyed > dancing until almost 3 years ago now. We live in Sonoma, California. If > any of you know anyone else who lives in this area with this disease > or have > any suggestions for our family to help her with her emotional & physical > struggles, it would be really helpful. I check this group every day for > ideas & suggestions. You are all very brave and I respect your courage & > strength in facing these life changing diseases. Sara has 2 sisters and > they are both healthy, going to school & working. Sara is has moved > in with > me and is gradually moving away from all her friendships. She is tired of > answering questions about what happened to her. Emotionally, we are all > spent. Any and all suggestions will be gratefully appreciated. Best > wishes > and my prayers go out to all of you. Thank you. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2006 Report Share Posted April 23, 2006 Yes That was Dale Who has lime disease > > Hi Jill, > > I can't imagine how you all feel - bad enough getting it in your late > 30's as many of us have, but not so young. In fact, from what I know > that is extremely young to get PLS and also it sounds like her > progression has been relatively rapid for PLS eg. losing the use of her > hand already. Given there has only just been a test developed which may > confirm a diagnosis of a motor neurone disease such as PLS I assume she > hasn't had it, so how confident can you be in the diagnosis? > > What I am getting at in particular is have you investigated the > possibility of things like Lyme Disease (LD)? If not that is something > I would definitely want to investigate further because it can mimic so > many other conditions and IS treatable. Someone else on here who has > suffered terribly with his PLS recently was re-diagnosed with LD and is > now on treatment which hopefully will eventually regain him a lot of > lost ground. > > > > Jill Kirscher wrote: > > > Hi. I am new to this group. I have a daughter that has been > > diagnosed with > > PLS. She is only 24 and is 2 ½ years into her symptoms. It took the > > doctors at UCSF a year and a half to diagnose her. She hangs onto the > > hope > > that one day if she works hard enough at her physical therapyshe will be > > able to run again and move her hand again. She was an athlete and enjoyed > > dancing until almost 3 years ago now. We live in Sonoma, California. If > > any of you know anyone else who lives in this area with this disease > > or have > > any suggestions for our family to help her with her emotional & physical > > struggles, it would be really helpful. I check this group every day for > > ideas & suggestions. You are all very brave and I respect your courage & > > strength in facing these life changing diseases. Sara has 2 sisters and > > they are both healthy, going to school & working. Sara is has moved > > in with > > me and is gradually moving away from all her friendships. She is tired of > > answering questions about what happened to her. Emotionally, we are all > > spent. Any and all suggestions will be gratefully appreciated. Best > > wishes > > and my prayers go out to all of you. Thank you. Jill > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2006 Report Share Posted April 23, 2006 I agree with that your daughter is way too young to have contracted PLS and it has moved too quickly. Dont just take these doctors word that PLS is what she has. I would look into other areas. As said Lymes disease carries the same symptoms and can be cured. Make an appointment for Sara to see an Infectious Diseases doctor. Aussie Maureen > > > Hi. I am new to this group. I have a daughter that has been > > diagnosed with > > PLS. She is only 24 and is 2 ½ years into her symptoms. It took the > > doctors at UCSF a year and a half to diagnose her. She hangs onto the > > hope > > that one day if she works hard enough at her physical therapyshe will be > > able to run again and move her hand again. She was an athlete and enjoyed > > dancing until almost 3 years ago now. We live in Sonoma, California. If > > any of you know anyone else who lives in this area with this disease > > or have > > any suggestions for our family to help her with her emotional & physical > > struggles, it would be really helpful. I check this group every day for > > ideas & suggestions. You are all very brave and I respect your courage & > > strength in facing these life changing diseases. Sara has 2 sisters and > > they are both healthy, going to school & working. Sara is has moved > > in with > > me and is gradually moving away from all her friendships. She is tired of > > answering questions about what happened to her. Emotionally, we are all > > spent. Any and all suggestions will be gratefully appreciated. Best > > wishes > > and my prayers go out to all of you. Thank you. Jill > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 I know but didn't feel the need to mention names at this point. Geo wrote: > Yes That was Dale Who has lime disease Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 Google it!! Best way to find the answer to almost anything. www.google.com Marks wrote: > what is Feldenkrais? > P Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 Google it!! Best way to find the answer to almost anything. www.google.com Marks wrote: > what is Feldenkrais? > P Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 Google it!! Best way to find the answer to almost anything. www.google.com Marks wrote: > what is Feldenkrais? > P Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.