Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 My doctor wrote " Probably PLS " ---------- in 1991. I met him again in 2005. He again wrote " Probably PLS " ! Jagan Re: re legs > Hi Carolyn, > > Did it take 15 years for you to be diagnosed!!??? I am still waiting > after 11 years. And like you have been to Dr after Dr. > .......................................................... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 there is no dx that says probably!!! is he still ruling things out or what or waiting until after the 5 year rule of the old dx standards? newer standards are 3 with the understanding the doc will continue to monitor for lower motor neuron involvement. probably---holy cow! Jagan jagancaca@...> wrote: My doctor wrote " Probably PLS " ---------- in 1991. I met him again in 2005. He again wrote " Probably PLS " ! Jagan Re: re legs > Hi Carolyn, > > Did it take 15 years for you to be diagnosed!!??? I am still waiting > after 11 years. And like you have been to Dr after Dr. > .......................................................... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 I am the same as you Jagan with " possible PLS " . So you have been waiting a long time too then. Its good to hear that I am not the only possible medical mystery out there. Aussie Maureen My doctor wrote " Probably PLS " ---------- in 1991. > I met him again in 2005. He again wrote " Probably PLS " ! > Jagan > Re: re legs > > > > Hi Carolyn, > > > > Did it take 15 years for you to be diagnosed!!??? I am still waiting > > after 11 years. And like you have been to Dr after Dr. > > .......................................................... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 cannot imagine the frustration for you guys---but then maybe we all probably have PLS since they really know so little? Maureen mazzie20022000@...> wrote: I am the same as you Jagan with " possible PLS " . So you have been waiting a long time too then. Its good to hear that I am not the only possible medical mystery out there. Aussie Maureen My doctor wrote " Probably PLS " ---------- in 1991. > I met him again in 2005. He again wrote " Probably PLS " ! > Jagan > Re: re legs > > > > Hi Carolyn, > > > > Did it take 15 years for you to be diagnosed!!??? I am still waiting > > after 11 years. And like you have been to Dr after Dr. > > .......................................................... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 Sorry Duke but the standards used by neurologists have written guidelines for " possible ALS " , " Probable ALS " , and confirmed ALS. The first two include PLS. The guidelines state for upper motor neuron involvement only to use either of the two for 3 years then DX as PLS unless its a bulbar onset (speech) then there is a 6 year waiting period until DX PLS. Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 I stand corrected, humbly, as i am not as well read and struggle actually finding research on the topic----I did read one that said the 3 and 5 for the PLS tho but that was only one. i like the PLS rather than probable ALS or possible ALS tho! Tawny briteeyestwo briteeyestwo@...> wrote: Sorry Duke but the standards used by neurologists have written guidelines for " possible ALS " , " Probable ALS " , and confirmed ALS. The first two include PLS. The guidelines state for upper motor neuron involvement only to use either of the two for 3 years then DX as PLS unless its a bulbar onset (speech) then there is a 6 year waiting period until DX PLS. Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 Amen to that. But calling it possible ALS gets you on SSDI faster. In my case they started out saying confirmed ALS so backing backdown to possible was a relief. Another point of view came from my daughter who said that since I just kept reporting possible ALS for 6 years she was ....well worn out from expecting my death. Kids, gotta love 'em Eva > Sorry Duke but the standards used by neurologists have written > guidelines for " possible ALS " , " Probable ALS " , and confirmed ALS. The > first two include PLS. The guidelines state for upper motor neuron > involvement only to use either of the two for 3 years then DX as PLS > unless its a bulbar onset (speech) then there is a 6 year waiting > period until DX PLS. > Eva > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 Don - Since lives in England you hit the nail squarely on the head. England lumps all motor neuron diseases together. Is Bettie Jo germinating her seeds for her beautiful flowers? Eva > > The guidelines mentioned by Eva are by no means universal. The vast > majority of neurologists never see a case of classical PLS. Those > physicians generally will follow a patient for a at least five years > before even making a tentative diagnosis. In Bettie Jo's case, it > took seven years. > > A fairly large number of neurologist are " lumpers " , lumping a number > of neurological diseases as ALS, rather than recognizing the separate > diseases, including PLS. One said " If you have to have ALS, this is > the better form to have. " > > This line of thought is supported by a study by Le Forestier, et. al, > who, after an extensive study of 20 patients diagnosed as PLS. The > conclusion drawn by the results of that study: " Our results, taken > in conjunction with those reported in clinical and post-mortem > studies, lead us to conclude that PLS is not a discrete disease. To > take this concept one stage further, the idea that motor neurone > disease itself should be considered as a member of a family on > neurodegenerative diseases with no absolute boundaries between them > has emerged in recent publications. " > > Don > Quote Link to comment Share on other sites More sharing options...
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