Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 Hi Rita, you wrote " Use your energy to enjoy life to the best of your ability, instead of spending time running from one doctor to another only to get the end result, PLS!!!! With me, its a different story. I run from one doctor to the next trying to get an end result and I virtually get " nothing " . Its been 9 years of doing the neuro shuffle for me. Maureen in Oz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 Maureen: I can't even imagine what that is like for you. Have you ever been dx with PLS? I know I was told, by more then one neuro that there is no way to dx PLS, there are no tests to determine that one has PLS, it's the process of elimination. When you don't know what it is, call it PLS. One doctor called it the " garbage disease " . I think also, when a neuro is confronted with PLS, and is not familiar with it, they just keep looking for answers and you can't fault them for that, and the insurance companies must love paying the bills. I am only trying to help, by telling you about ME! And after 30 years with this sucky disease, I do know little bit about. Good Luck! Rita Till next time! Love & Hugs ****************************** Some people succeed in spite of their handicap. Others succeed because of them. Re: MS vs PLS/Rita Hi Rita, you wrote " Use your energy to enjoy life to the best of your ability, instead of spending time running from one doctor to another only to get the end result, PLS!!!! With me, its a different story. I run from one doctor to the next trying to get an end result and I virtually get " nothing " . Its been 9 years of doing the neuro shuffle for me. Maureen in Oz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 Hi Rita, PLS had been mentioned by one Professor but then he and another Professor discounted it and thought I was more along the lines of HSP but no confirmed diagnosis. Yes I have the leg stiffness of HSPers but also the slurred speech and the overactive startle reflex and emotional liability that HSPers dont have. Also noone in my family has HSP. Sounds very much like PLS to me. Then I saw a Professor of Neurogenetics who emphatically stated that I had recessive HSP with startle myoclonus. Recessive = noone in the family has it. startle myoclonus = overactive startle reflex Once again sounds like PLS. He sent me to one of his colleagues to see if there was a cerebellar component because of my slurred sppech and there is none so now he is doubting his working diagnosis of HSP and talking about PLS. I also went to an ALS clinic and the neuro there also thought I was more HSP than PLS but still no diagnosis. I see this doctor again in March and if they come up with nothing again then I am done with Neurologists and will just tell anyone who asks that I have Spastic Paraperisis with startle myoclonus. That is what the very first neuro told me to say. However the latest development is like Dale's devlopment with Lymes disease. Have been tested for it and will find out late January if I have it or not as Doctor is away on vacation till then. Rita, I very much like you telling me about yourself because if I do have PLS then its comforting to know that you have had it for 30 years and still going strong. Maureen (australia) > > Maureen: > > I can't even imagine what that is like for you. Have you ever been dx with PLS? I know I was told, by more then one neuro that there is no way to dx PLS, there are no tests to determine that one has PLS, it's the process of elimination. When you don't know what it is, call it PLS. One doctor called it the " garbage disease " . > > I think also, when a neuro is confronted with PLS, and is not familiar with it, they just keep looking for answers and you can't fault them for that, and the insurance companies must love paying the bills. > > I am only trying to help, by telling you about ME! And after 30 years with this sucky disease, I do know little bit about. > > Good Luck! > > Rita > > > Till next time! > > Love & Hugs > > > > ****************************** > Some people succeed in spite of their handicap. > Others succeed because of them. > > > > Re: MS vs PLS/Rita > > Hi Rita, you wrote " Use your energy > to enjoy life to the best of your ability, instead of spending time > running from > one doctor to another only to get the end result, PLS!!!! > > With me, its a different story. I run from one doctor to the next > trying to get an end result and I virtually get " nothing " . Its been 9 > years of doing the neuro shuffle for me. > > Maureen in Oz > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 Maureen: I also have stiff legs, as so many other PLSer's do. In fact my legs have been the main source of my problems over all these past years. My speech is slurred, especially when I am over tired or upset, so I try to control that the best I can, I use a walker all the time, and a power chair to go out when I have to do a lot of walking. But I have managed over the years to not to do what Ii shouldn't and of course don't do what I can't. Lots of people fight these diseases, but I found out that less is best for me. When I couldn't work anymore I stopped, when I couldn't take care of my home, we bought one all on one floor. But I have been very fortunate to have a great husband of almost 45 years, who make's life very easy for me. You have more patients then I had, after 2 1/2 years I took control of my own life, and go to my neuro once a year, and try to lead as normal a life as I can. It isn't all that bad and I have been this way for so long I forget what normal is!!! Rita Till next time! Love & Hugs ****************************** Some people succeed in spite of their handicap. Others succeed because of them. Re: MS vs PLS/Rita > > Hi Rita, you wrote " Use your energy > to enjoy life to the best of your ability, instead of spending time > running from > one doctor to another only to get the end result, PLS!!!! > > With me, its a different story. I run from one doctor to the next > trying to get an end result and I virtually get " nothing " . Its been 9 > years of doing the neuro shuffle for me. > > Maureen in Oz > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 Rita, I feel I am very much like you both physically and mentally. When I felt I couldnt work any longer then I stopped. But was only able to do that as the house was paid off and I had paid into a retirement/total and permanent disablement plan and got paid out when I left. I began to use a walker when I got fed up with being dependent on others and also mainly have slurred speech when tired or upset like you and when I take a Clonazepam. Stiffness in the legs is also my main problem. With cleaning the house, I only use a cleaner once a year to do a thorough spring clean but otherwise I do it myself at my own pace and am fortunate like you to have a wonderful husband who helps me out a lot. I actually have no patience whatsoever with the neurologists who cant help me. C lives in Melbourne and he was diagnosed early. Janet is a Sydneysider like me and also got diagnosed early and there is another member here who doesnt post but has been in touch with me and lives in Queensland, Australia who was also diagnosed early. So why cant these guys diagnose me?? I keep doing the neuro shuffle to try and find a diagnosis but also to try and find out if what I have is maybe not neurological but maybe an infection like Lymes Disease for instance. If I do have PLS, I pray to God that I and all of us can be like you. Maureen (Australia) > > > > Maureen: > > > > I can't even imagine what that is like for you. Have you ever been > dx with PLS? I know I was told, by more then one neuro that there is > no way to dx PLS, there are no tests to determine that one has PLS, > it's the process of elimination. When you don't know what it is, > call it PLS. One doctor called it the " garbage disease " . > > > > I think also, when a neuro is confronted with PLS, and is not > familiar with it, they just keep looking for answers and you can't > fault them for that, and the insurance companies must love paying the > bills. > > > > I am only trying to help, by telling you about ME! And after 30 > years with this sucky disease, I do know little bit about. > > > > Good Luck! > > > > Rita > > > > > > Till next time! > > > > Love & Hugs > > > > > > > > ****************************** > > Some people succeed in spite of their handicap. > > Others succeed because of them. > > > > > > > > Re: MS vs PLS/Rita > > > > Hi Rita, you wrote " Use your energy > > to enjoy life to the best of your ability, instead of spending time > > running from > > one doctor to another only to get the end result, PLS!!!! > > > > With me, its a different story. I run from one doctor to the next > > trying to get an end result and I virtually get " nothing " . Its > been 9 > > years of doing the neuro shuffle for me. > > > > Maureen in Oz > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 Maureen: It is not easy to dx PLS. As I told you before, there are no tests that says, " 'ahah " you have PLS, it is thru the process of elimination. And I also was told that the only way to tell what is going on in the brain, is when it been autopsied (I can wait) LOL. I have a few other thoughts about it, and that is the aging process. I am almost 70 and I am sure that has an effect on my overall condition, and weight. I am slightly over-weight and I am sure that doesn't help as far as my legs are concerned, but I have very good upper-body strength. Balance is a big problem, just touch me and over I go, so it's not always the PLS, it's all of the above. I have had a bad head cold this past week, and my body has little or no energy, can't blame that PLS. Yes, we sound very similar in our symptoms, however, there are many who are less severe and other's who are more. But I just go with it, and try to do the best I can, and so far so good. Good Luck! Rita Till next time! Love & Hugs ****************************** Some people succeed in spite of their handicap. Others succeed because of them. Re: MS vs PLS/Rita > > > > Hi Rita, you wrote " Use your energy > > to enjoy life to the best of your ability, instead of spending time > > running from > > one doctor to another only to get the end result, PLS!!!! > > > > With me, its a different story. I run from one doctor to the next > > trying to get an end result and I virtually get " nothing " . Its > been 9 > > years of doing the neuro shuffle for me. > > > > Maureen in Oz > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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