Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 Hi . My name is Dean. I am a 37 year old male. I was diagnosed with PLS about 18 months ago. I have had symptoms since I was 29. Sorry you have had to join this group, but it definitely helps having someone to answer some questions. Everyone is very helpful and positive. > I am 32 y/o female and have been diagnosed with an unknown > neurological condition. My neurologist is pretty sure that I have > PLS. I have a lot of the symptoms, but yet my test results are coming > back " normal " . I have had 4 EMG's since this began in July of 2004 > and I have had 4 MRI's and numerous blood tests. Some that have been > sent to Mayo. I still am not any closer in receiving a diagnosis. > > My symptoms are as follows, In July my back started cramping so bad > that it caused my right leg to have pain and fall asleep at times > (this no longer happens). Then after that happened I started having > such bad cramping in my calves first right then left. Also at this > time I have a " dimple " or maybe atrophy on my right calf. But, they > are watching that. I have weakness, it first started in my right > side and went to the left. Everything started in my legs and back > first and just recently I have postural shaking my hands. I can't > lift my hands above my hand because it gets " heavy " feeling. I walk > with a cane because my balance and gait are really bad and use a > wheelchair for long distances. In February of this year I spent a few > days in ICU because I had shortness of breath and felt as if > something was caught in my throat. That's when I ended up using my > nightly BiPap machine and sometimes during the day. A few weeks ago > we found out what this is and it's Paradoxical Vocal Cord Movement. > My brain is sending mixed signals to the respiratory portion of my > body. I have tried neurotin, zanaflex and tegretol the only thing > that works for me is Baclofen but I got a rash and had to discontinue > the use. Intermittently if I overdo things I get pains in my calves. > I have problems talking and talk like a frog or with " hoarseness " and > quiet and from time to time have swallowing problems. Just recently I > have acquired tongue tremors. So, it's back to the neuromuscular > specialist on Monday to see what he says. > > I have been told it could be possible Als, Isaac's Syndrome and > Benign Fascilations Syndrome. It's progressing at a pretty steady > rate and have been told only time will tell. At the same time I have > applied for social security and have yet to receive an answer and > also have appealed my HMO decision not to send me to Mayo to see what > they would say. > > Is it possible to have PLS without having " abnormal " test results? > > Thank you for reading this, sorry it's so long > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 Hi . My name is Dean. I am a 37 year old male. I was diagnosed with PLS about 18 months ago. I have had symptoms since I was 29. Sorry you have had to join this group, but it definitely helps having someone to answer some questions. Everyone is very helpful and positive. > I am 32 y/o female and have been diagnosed with an unknown > neurological condition. My neurologist is pretty sure that I have > PLS. I have a lot of the symptoms, but yet my test results are coming > back " normal " . I have had 4 EMG's since this began in July of 2004 > and I have had 4 MRI's and numerous blood tests. Some that have been > sent to Mayo. I still am not any closer in receiving a diagnosis. > > My symptoms are as follows, In July my back started cramping so bad > that it caused my right leg to have pain and fall asleep at times > (this no longer happens). Then after that happened I started having > such bad cramping in my calves first right then left. Also at this > time I have a " dimple " or maybe atrophy on my right calf. But, they > are watching that. I have weakness, it first started in my right > side and went to the left. Everything started in my legs and back > first and just recently I have postural shaking my hands. I can't > lift my hands above my hand because it gets " heavy " feeling. I walk > with a cane because my balance and gait are really bad and use a > wheelchair for long distances. In February of this year I spent a few > days in ICU because I had shortness of breath and felt as if > something was caught in my throat. That's when I ended up using my > nightly BiPap machine and sometimes during the day. A few weeks ago > we found out what this is and it's Paradoxical Vocal Cord Movement. > My brain is sending mixed signals to the respiratory portion of my > body. I have tried neurotin, zanaflex and tegretol the only thing > that works for me is Baclofen but I got a rash and had to discontinue > the use. Intermittently if I overdo things I get pains in my calves. > I have problems talking and talk like a frog or with " hoarseness " and > quiet and from time to time have swallowing problems. Just recently I > have acquired tongue tremors. So, it's back to the neuromuscular > specialist on Monday to see what he says. > > I have been told it could be possible Als, Isaac's Syndrome and > Benign Fascilations Syndrome. It's progressing at a pretty steady > rate and have been told only time will tell. At the same time I have > applied for social security and have yet to receive an answer and > also have appealed my HMO decision not to send me to Mayo to see what > they would say. > > Is it possible to have PLS without having " abnormal " test results? > > Thank you for reading this, sorry it's so long > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 --- I know what you are going through I am having the same problem with social security and all. Have been turned down once working on the second time and my wife doesn't work and hasn't since 1985 and I am the bread winner of the family. My symptoms started in Feb. 2003 and I managed to keep work till Sept 2004 before I could not walk to the parking lot and I am still dening PLS to a point but thats the dxs I got I also have the choking spells to and I took nurotin for a year for pain and it didn't do a bit of good but now it is working and if I miss it I will hurt real bad so it took a long time to start working for me and I take one qunine capsule at night to stop those bad leg cramps but I don't guess that would work for everyone I even take that baclofen for a muscle relaxer that you can't take they also have me giving myself a avonex injection once a week which I know is not for every one so I guess everyone on here has a story to tell but you hold your head up and stay strong and keep reading all these posts and asking questions and hang in there and you will make it and if you can get a little fiscal therapy go for it and get them to get you on some kind of exersises you can do it will probably help some because you are still young yet. Take Care Danny in Tennessee In PLS-FRIENDS , " jbielech1 " <jbielech1@y...> wrote: > I am 32 y/o female and have been diagnosed with an unknown > neurological condition. My neurologist is pretty sure that I have > PLS. I have a lot of the symptoms, but yet my test results are coming > back " normal " . I have had 4 EMG's since this began in July of 2004 > and I have had 4 MRI's and numerous blood tests. Some that have been > sent to Mayo. I still am not any closer in receiving a diagnosis. > > My symptoms are as follows, In July my back started cramping so bad > that it caused my right leg to have pain and fall asleep at times > (this no longer happens). Then after that happened I started having > such bad cramping in my calves first right then left. Also at this > time I have a " dimple " or maybe atrophy on my right calf. But, they > are watching that. I have weakness, it first started in my right > side and went to the left. Everything started in my legs and back > first and just recently I have postural shaking my hands. I can't > lift my hands above my hand because it gets " heavy " feeling. I walk > with a cane because my balance and gait are really bad and use a > wheelchair for long distances. In February of this year I spent a few > days in ICU because I had shortness of breath and felt as if > something was caught in my throat. That's when I ended up using my > nightly BiPap machine and sometimes during the day. A few weeks ago > we found out what this is and it's Paradoxical Vocal Cord Movement. > My brain is sending mixed signals to the respiratory portion of my > body. I have tried neurotin, zanaflex and tegretol the only thing > that works for me is Baclofen but I got a rash and had to discontinue > the use. Intermittently if I overdo things I get pains in my calves. > I have problems talking and talk like a frog or with " hoarseness " and > quiet and from time to time have swallowing problems. Just recently I > have acquired tongue tremors. So, it's back to the neuromuscular > specialist on Monday to see what he says. > > I have been told it could be possible Als, Isaac's Syndrome and > Benign Fascilations Syndrome. It's progressing at a pretty steady > rate and have been told only time will tell. At the same time I have > applied for social security and have yet to receive an answer and > also have appealed my HMO decision not to send me to Mayo to see what > they would say. > > Is it possible to have PLS without having " abnormal " test results? > > Thank you for reading this, sorry it's so long > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 , no you're not crazy. weather does effect us but in different ways. Some PLS'er cannot stand the heat and I don't care for the cold or rainy days. Today it's a rainy day in our area of Florida. My bones don't to do well in dampness. I've gone up to North Carolina during November and I could hardy walk. The cold makes me walk like the " Tin Man " in the Wizard of Oz. Even my chin didn't stop chattering until I warmed up. Fatigue is my worse enemy some days I can go all day long and then there are days I nap periodically during the afternoon........There is no rhyme or reason for it, it just happens. I have asthma so cold weather does make breathing harder............................Flora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 , no you're not crazy. weather does effect us but in different ways. Some PLS'er cannot stand the heat and I don't care for the cold or rainy days. Today it's a rainy day in our area of Florida. My bones don't to do well in dampness. I've gone up to North Carolina during November and I could hardy walk. The cold makes me walk like the " Tin Man " in the Wizard of Oz. Even my chin didn't stop chattering until I warmed up. Fatigue is my worse enemy some days I can go all day long and then there are days I nap periodically during the afternoon........There is no rhyme or reason for it, it just happens. I have asthma so cold weather does make breathing harder............................Flora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 , I ditto what Flora said (other than I don't have asthma). Cold weather leaves me almost paralyzed and I definitely have the chattering teeth. Today here in CA it's pretty warm so I'm moving better but as soon as the sun goes down and it gets chilly, out comes all the sweatshirts. My friends all know I'm cold if its' under 80 degrees. G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 , I ditto what Flora said (other than I don't have asthma). Cold weather leaves me almost paralyzed and I definitely have the chattering teeth. Today here in CA it's pretty warm so I'm moving better but as soon as the sun goes down and it gets chilly, out comes all the sweatshirts. My friends all know I'm cold if its' under 80 degrees. G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 Oh yes Mike, I forgot to put in there (of course if I put everything in my email it would be a book ). That I have been to two neurologists and two neuromuscular specialists. The first neurologist (because they thought it was my back) said " I don't know why you're shaking, you shouldn't be shaking " . He really thought I was " crazy " it even said it in the Dr. notes and that I jumped all over the place when I explained my symptoms and I seemed to be very nervous. I also realized that I wouldn't be back to that neurologist. 1) I didn't like his bed side manner and 2) I couldn't talk to him if I needed to. I really think its because my symptoms weren't as progressed as they are now. Then I made it to my neurologist now @ Mercy Hospital in Chicago, IL. The very first visit he knew what buttons to push to get me shaking (mind you I wasn't shaking before) and for 8 hours they ran tests and checked me out in his office. He told me point blank on my 2nd visit that this is something that is not cureable and they only can treat my symptoms. He has not seen other cases besides mine but does know well about PLS. Since all tests came back normal he sent me to my first neuromuscular specialist @ the University of Illinois at Chicago and the Dr. there did a paper on Isaac's Syndrome and swore that this was Isaac's (neuromyotonia). He really didn't think it was ALS but rather couldn't rule it out all the way. I was discouraged and went to my 2nd neuromuscular specialist at the University of Chicago. I didn't like her bedside manner and she didn't think it was Isaac's and after my 4th EMG came out clean she said that she couldn't find anything in the EMG neurological-wise that was wrong with me. I asked her then why does my voice sound the way it does and why can't I breathe or swallow sometimes. She didn't have an answer and told me to get my Pulmonary Function Test done. I truely didn't like her bedside manner and asked if I could go to Mayo to have them look at me. I know that this is not in my head. Especially my fatigue. My brainy insurance company came up with sending my test results to Mayo to see if they can diagnose me without me actually being there. I told them I wanted a diagnosis but the right one, not one out of a cereal box or fortune cookie. > , > > Yes, it is possible. Almost all of my test results indicated nothing wrong > with me. I was told it " was all in my head. " I had my impressions about the > first neurologists I saw. My current neurologist, who diagnosed me in May > 1996, asked my opinion about the two I had seen before. I told him and he > laughed and said that I was very perceptive. I liked him from that moment > on. Two weeks later I had an EMG and the results of that, with the results > of all the other tests he had seen, indicated to him PLS. I was his first > patient with this disease. Guess what? He had done some research during the > two weeks between appointments and found that my symptoms correlated with > those of PLS, which he had not really heard much about until then. > > I wish everyone could find a neuro like him. > > Mike Gray > PLS Diagnosis > > > >I am 32 y/o female and have been diagnosed with an unknown > > neurological condition. My neurologist is pretty sure that I have > > PLS. I have a lot of the symptoms, but yet my test results are coming > > back " normal " . I have had 4 EMG's since this began in July of 2004 > > and I have had 4 MRI's and numerous blood tests. Some that have been > > sent to Mayo. I still am not any closer in receiving a diagnosis. > > > > My symptoms are as follows, In July my back started cramping so bad > > that it caused my right leg to have pain and fall asleep at times > > (this no longer happens). Then after that happened I started having > > such bad cramping in my calves first right then left. Also at this > > time I have a " dimple " or maybe atrophy on my right calf. But, they > > are watching that. I have weakness, it first started in my right > > side and went to the left. Everything started in my legs and back > > first and just recently I have postural shaking my hands. I can't > > lift my hands above my hand because it gets " heavy " feeling. I walk > > with a cane because my balance and gait are really bad and use a > > wheelchair for long distances. In February of this year I spent a few > > days in ICU because I had shortness of breath and felt as if > > something was caught in my throat. That's when I ended up using my > > nightly BiPap machine and sometimes during the day. A few weeks ago > > we found out what this is and it's Paradoxical Vocal Cord Movement. > > My brain is sending mixed signals to the respiratory portion of my > > body. I have tried neurotin, zanaflex and tegretol the only thing > > that works for me is Baclofen but I got a rash and had to discontinue > > the use. Intermittently if I overdo things I get pains in my calves. > > I have problems talking and talk like a frog or with " hoarseness " and > > quiet and from time to time have swallowing problems. Just recently I > > have acquired tongue tremors. So, it's back to the neuromuscular > > specialist on Monday to see what he says. > > > > I have been told it could be possible Als, Isaac's Syndrome and > > Benign Fascilations Syndrome. It's progressing at a pretty steady > > rate and have been told only time will tell. At the same time I have > > applied for social security and have yet to receive an answer and > > also have appealed my HMO decision not to send me to Mayo to see what > > they would say. > > > > Is it possible to have PLS without having " abnormal " test results? > > > > Thank you for reading this, sorry it's so long > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 Oh yes Mike, I forgot to put in there (of course if I put everything in my email it would be a book ). That I have been to two neurologists and two neuromuscular specialists. The first neurologist (because they thought it was my back) said " I don't know why you're shaking, you shouldn't be shaking " . He really thought I was " crazy " it even said it in the Dr. notes and that I jumped all over the place when I explained my symptoms and I seemed to be very nervous. I also realized that I wouldn't be back to that neurologist. 1) I didn't like his bed side manner and 2) I couldn't talk to him if I needed to. I really think its because my symptoms weren't as progressed as they are now. Then I made it to my neurologist now @ Mercy Hospital in Chicago, IL. The very first visit he knew what buttons to push to get me shaking (mind you I wasn't shaking before) and for 8 hours they ran tests and checked me out in his office. He told me point blank on my 2nd visit that this is something that is not cureable and they only can treat my symptoms. He has not seen other cases besides mine but does know well about PLS. Since all tests came back normal he sent me to my first neuromuscular specialist @ the University of Illinois at Chicago and the Dr. there did a paper on Isaac's Syndrome and swore that this was Isaac's (neuromyotonia). He really didn't think it was ALS but rather couldn't rule it out all the way. I was discouraged and went to my 2nd neuromuscular specialist at the University of Chicago. I didn't like her bedside manner and she didn't think it was Isaac's and after my 4th EMG came out clean she said that she couldn't find anything in the EMG neurological-wise that was wrong with me. I asked her then why does my voice sound the way it does and why can't I breathe or swallow sometimes. She didn't have an answer and told me to get my Pulmonary Function Test done. I truely didn't like her bedside manner and asked if I could go to Mayo to have them look at me. I know that this is not in my head. Especially my fatigue. My brainy insurance company came up with sending my test results to Mayo to see if they can diagnose me without me actually being there. I told them I wanted a diagnosis but the right one, not one out of a cereal box or fortune cookie. > , > > Yes, it is possible. Almost all of my test results indicated nothing wrong > with me. I was told it " was all in my head. " I had my impressions about the > first neurologists I saw. My current neurologist, who diagnosed me in May > 1996, asked my opinion about the two I had seen before. I told him and he > laughed and said that I was very perceptive. I liked him from that moment > on. Two weeks later I had an EMG and the results of that, with the results > of all the other tests he had seen, indicated to him PLS. I was his first > patient with this disease. Guess what? He had done some research during the > two weeks between appointments and found that my symptoms correlated with > those of PLS, which he had not really heard much about until then. > > I wish everyone could find a neuro like him. > > Mike Gray > PLS Diagnosis > > > >I am 32 y/o female and have been diagnosed with an unknown > > neurological condition. My neurologist is pretty sure that I have > > PLS. I have a lot of the symptoms, but yet my test results are coming > > back " normal " . I have had 4 EMG's since this began in July of 2004 > > and I have had 4 MRI's and numerous blood tests. Some that have been > > sent to Mayo. I still am not any closer in receiving a diagnosis. > > > > My symptoms are as follows, In July my back started cramping so bad > > that it caused my right leg to have pain and fall asleep at times > > (this no longer happens). Then after that happened I started having > > such bad cramping in my calves first right then left. Also at this > > time I have a " dimple " or maybe atrophy on my right calf. But, they > > are watching that. I have weakness, it first started in my right > > side and went to the left. Everything started in my legs and back > > first and just recently I have postural shaking my hands. I can't > > lift my hands above my hand because it gets " heavy " feeling. I walk > > with a cane because my balance and gait are really bad and use a > > wheelchair for long distances. In February of this year I spent a few > > days in ICU because I had shortness of breath and felt as if > > something was caught in my throat. That's when I ended up using my > > nightly BiPap machine and sometimes during the day. A few weeks ago > > we found out what this is and it's Paradoxical Vocal Cord Movement. > > My brain is sending mixed signals to the respiratory portion of my > > body. I have tried neurotin, zanaflex and tegretol the only thing > > that works for me is Baclofen but I got a rash and had to discontinue > > the use. Intermittently if I overdo things I get pains in my calves. > > I have problems talking and talk like a frog or with " hoarseness " and > > quiet and from time to time have swallowing problems. Just recently I > > have acquired tongue tremors. So, it's back to the neuromuscular > > specialist on Monday to see what he says. > > > > I have been told it could be possible Als, Isaac's Syndrome and > > Benign Fascilations Syndrome. It's progressing at a pretty steady > > rate and have been told only time will tell. At the same time I have > > applied for social security and have yet to receive an answer and > > also have appealed my HMO decision not to send me to Mayo to see what > > they would say. > > > > Is it possible to have PLS without having " abnormal " test results? > > > > Thank you for reading this, sorry it's so long > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 Oh yes Mike, I forgot to put in there (of course if I put everything in my email it would be a book ). That I have been to two neurologists and two neuromuscular specialists. The first neurologist (because they thought it was my back) said " I don't know why you're shaking, you shouldn't be shaking " . He really thought I was " crazy " it even said it in the Dr. notes and that I jumped all over the place when I explained my symptoms and I seemed to be very nervous. I also realized that I wouldn't be back to that neurologist. 1) I didn't like his bed side manner and 2) I couldn't talk to him if I needed to. I really think its because my symptoms weren't as progressed as they are now. Then I made it to my neurologist now @ Mercy Hospital in Chicago, IL. The very first visit he knew what buttons to push to get me shaking (mind you I wasn't shaking before) and for 8 hours they ran tests and checked me out in his office. He told me point blank on my 2nd visit that this is something that is not cureable and they only can treat my symptoms. He has not seen other cases besides mine but does know well about PLS. Since all tests came back normal he sent me to my first neuromuscular specialist @ the University of Illinois at Chicago and the Dr. there did a paper on Isaac's Syndrome and swore that this was Isaac's (neuromyotonia). He really didn't think it was ALS but rather couldn't rule it out all the way. I was discouraged and went to my 2nd neuromuscular specialist at the University of Chicago. I didn't like her bedside manner and she didn't think it was Isaac's and after my 4th EMG came out clean she said that she couldn't find anything in the EMG neurological-wise that was wrong with me. I asked her then why does my voice sound the way it does and why can't I breathe or swallow sometimes. She didn't have an answer and told me to get my Pulmonary Function Test done. I truely didn't like her bedside manner and asked if I could go to Mayo to have them look at me. I know that this is not in my head. Especially my fatigue. My brainy insurance company came up with sending my test results to Mayo to see if they can diagnose me without me actually being there. I told them I wanted a diagnosis but the right one, not one out of a cereal box or fortune cookie. > , > > Yes, it is possible. Almost all of my test results indicated nothing wrong > with me. I was told it " was all in my head. " I had my impressions about the > first neurologists I saw. My current neurologist, who diagnosed me in May > 1996, asked my opinion about the two I had seen before. I told him and he > laughed and said that I was very perceptive. I liked him from that moment > on. Two weeks later I had an EMG and the results of that, with the results > of all the other tests he had seen, indicated to him PLS. I was his first > patient with this disease. Guess what? He had done some research during the > two weeks between appointments and found that my symptoms correlated with > those of PLS, which he had not really heard much about until then. > > I wish everyone could find a neuro like him. > > Mike Gray > PLS Diagnosis > > > >I am 32 y/o female and have been diagnosed with an unknown > > neurological condition. My neurologist is pretty sure that I have > > PLS. I have a lot of the symptoms, but yet my test results are coming > > back " normal " . I have had 4 EMG's since this began in July of 2004 > > and I have had 4 MRI's and numerous blood tests. Some that have been > > sent to Mayo. I still am not any closer in receiving a diagnosis. > > > > My symptoms are as follows, In July my back started cramping so bad > > that it caused my right leg to have pain and fall asleep at times > > (this no longer happens). Then after that happened I started having > > such bad cramping in my calves first right then left. Also at this > > time I have a " dimple " or maybe atrophy on my right calf. But, they > > are watching that. I have weakness, it first started in my right > > side and went to the left. Everything started in my legs and back > > first and just recently I have postural shaking my hands. I can't > > lift my hands above my hand because it gets " heavy " feeling. I walk > > with a cane because my balance and gait are really bad and use a > > wheelchair for long distances. In February of this year I spent a few > > days in ICU because I had shortness of breath and felt as if > > something was caught in my throat. That's when I ended up using my > > nightly BiPap machine and sometimes during the day. A few weeks ago > > we found out what this is and it's Paradoxical Vocal Cord Movement. > > My brain is sending mixed signals to the respiratory portion of my > > body. I have tried neurotin, zanaflex and tegretol the only thing > > that works for me is Baclofen but I got a rash and had to discontinue > > the use. Intermittently if I overdo things I get pains in my calves. > > I have problems talking and talk like a frog or with " hoarseness " and > > quiet and from time to time have swallowing problems. Just recently I > > have acquired tongue tremors. So, it's back to the neuromuscular > > specialist on Monday to see what he says. > > > > I have been told it could be possible Als, Isaac's Syndrome and > > Benign Fascilations Syndrome. It's progressing at a pretty steady > > rate and have been told only time will tell. At the same time I have > > applied for social security and have yet to receive an answer and > > also have appealed my HMO decision not to send me to Mayo to see what > > they would say. > > > > Is it possible to have PLS without having " abnormal " test results? > > > > Thank you for reading this, sorry it's so long > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 Hi , Welcome to our humble 'home'. I see from your posts you've been making the neuro rounds. Unfortunately what we have is so rare that that is what it takes. Probably most, if not all, of us have been told by one of them 'go get psych help' . All my early tests (MRI's, LP, Blood, NCV, EMGs etc..) were normal - and there were dozens but now the new ones aren't. Wasn't sure to be happy/relieved or not. For me, i am better off knowing. My one test showed more of a delay in my left brain than the right, so now i tell people i have good news/bad news - am brain damaged but at least i am still in my right mind! Colleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 Hi , Welcome to our humble 'home'. I see from your posts you've been making the neuro rounds. Unfortunately what we have is so rare that that is what it takes. Probably most, if not all, of us have been told by one of them 'go get psych help' . All my early tests (MRI's, LP, Blood, NCV, EMGs etc..) were normal - and there were dozens but now the new ones aren't. Wasn't sure to be happy/relieved or not. For me, i am better off knowing. My one test showed more of a delay in my left brain than the right, so now i tell people i have good news/bad news - am brain damaged but at least i am still in my right mind! Colleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 Hi , Welcome to our humble 'home'. I see from your posts you've been making the neuro rounds. Unfortunately what we have is so rare that that is what it takes. Probably most, if not all, of us have been told by one of them 'go get psych help' . All my early tests (MRI's, LP, Blood, NCV, EMGs etc..) were normal - and there were dozens but now the new ones aren't. Wasn't sure to be happy/relieved or not. For me, i am better off knowing. My one test showed more of a delay in my left brain than the right, so now i tell people i have good news/bad news - am brain damaged but at least i am still in my right mind! Colleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 - It sounds like you and I have a lot in common. I am 33 and I have been diagnosed with potentially PLS (right now I am being monitored of my progress). I was told that this was all in my head by several doctors....after all of my tests came back normal too. I actually had a doctor tell me there is no way I have PLS because I am too young (which I found out later that is not the case). Doctors have wanted me to go and have sleep studies done just to prove to them that I do spasm in my sleep. Needless to say...all of this constant proving has gotten annoying and frustrating. You are in the correct group to ask your questions of. These guys have been very supportive and helpful to me...and I do not know what I would have done without their advice. It is their advice I bring with me to doctors appointments so that when they say something that doesn't match what I know...I am armed to come back at them with a resounding BUT... Good luck to you...and ask me if you have any questions...I am more than willing to help. > > , > > > > Yes, it is possible. Almost all of my test results indicated nothing > wrong > > with me. I was told it " was all in my head. " I had my impressions > about the > > first neurologists I saw. My current neurologist, who diagnosed me > in May > > 1996, asked my opinion about the two I had seen before. I told him > and he > > laughed and said that I was very perceptive. I liked him from that > moment > > on. Two weeks later I had an EMG and the results of that, with the > results > > of all the other tests he had seen, indicated to him PLS. I was his > first > > patient with this disease. Guess what? He had done some research > during the > > two weeks between appointments and found that my symptoms correlated > with > > those of PLS, which he had not really heard much about until then. > > > > I wish everyone could find a neuro like him. > > > > Mike Gray > > PLS Diagnosis > > > > > > >I am 32 y/o female and have been diagnosed with an unknown > > > neurological condition. My neurologist is pretty sure that I have > > > PLS. I have a lot of the symptoms, but yet my test results are coming > > > back " normal " . I have had 4 EMG's since this began in July of 2004 > > > and I have had 4 MRI's and numerous blood tests. Some that have been > > > sent to Mayo. I still am not any closer in receiving a diagnosis. > > > > > > My symptoms are as follows, In July my back started cramping so bad > > > that it caused my right leg to have pain and fall asleep at times > > > (this no longer happens). Then after that happened I started having > > > such bad cramping in my calves first right then left. Also at this > > > time I have a " dimple " or maybe atrophy on my right calf. But, they > > > are watching that. I have weakness, it first started in my right > > > side and went to the left. Everything started in my legs and back > > > first and just recently I have postural shaking my hands. I can't > > > lift my hands above my hand because it gets " heavy " feeling. I walk > > > with a cane because my balance and gait are really bad and use a > > > wheelchair for long distances. In February of this year I spent a few > > > days in ICU because I had shortness of breath and felt as if > > > something was caught in my throat. That's when I ended up using my > > > nightly BiPap machine and sometimes during the day. A few weeks ago > > > we found out what this is and it's Paradoxical Vocal Cord Movement. > > > My brain is sending mixed signals to the respiratory portion of my > > > body. I have tried neurotin, zanaflex and tegretol the only thing > > > that works for me is Baclofen but I got a rash and had to discontinue > > > the use. Intermittently if I overdo things I get pains in my calves. > > > I have problems talking and talk like a frog or with " hoarseness " and > > > quiet and from time to time have swallowing problems. Just recently I > > > have acquired tongue tremors. So, it's back to the neuromuscular > > > specialist on Monday to see what he says. > > > > > > I have been told it could be possible Als, Isaac's Syndrome and > > > Benign Fascilations Syndrome. It's progressing at a pretty steady > > > rate and have been told only time will tell. At the same time I have > > > applied for social security and have yet to receive an answer and > > > also have appealed my HMO decision not to send me to Mayo to see what > > > they would say. > > > > > > Is it possible to have PLS without having " abnormal " test results? > > > > > > Thank you for reading this, sorry it's so long > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 - It sounds like you and I have a lot in common. I am 33 and I have been diagnosed with potentially PLS (right now I am being monitored of my progress). I was told that this was all in my head by several doctors....after all of my tests came back normal too. I actually had a doctor tell me there is no way I have PLS because I am too young (which I found out later that is not the case). Doctors have wanted me to go and have sleep studies done just to prove to them that I do spasm in my sleep. Needless to say...all of this constant proving has gotten annoying and frustrating. You are in the correct group to ask your questions of. These guys have been very supportive and helpful to me...and I do not know what I would have done without their advice. It is their advice I bring with me to doctors appointments so that when they say something that doesn't match what I know...I am armed to come back at them with a resounding BUT... Good luck to you...and ask me if you have any questions...I am more than willing to help. > > , > > > > Yes, it is possible. Almost all of my test results indicated nothing > wrong > > with me. I was told it " was all in my head. " I had my impressions > about the > > first neurologists I saw. My current neurologist, who diagnosed me > in May > > 1996, asked my opinion about the two I had seen before. I told him > and he > > laughed and said that I was very perceptive. I liked him from that > moment > > on. Two weeks later I had an EMG and the results of that, with the > results > > of all the other tests he had seen, indicated to him PLS. I was his > first > > patient with this disease. Guess what? He had done some research > during the > > two weeks between appointments and found that my symptoms correlated > with > > those of PLS, which he had not really heard much about until then. > > > > I wish everyone could find a neuro like him. > > > > Mike Gray > > PLS Diagnosis > > > > > > >I am 32 y/o female and have been diagnosed with an unknown > > > neurological condition. My neurologist is pretty sure that I have > > > PLS. I have a lot of the symptoms, but yet my test results are coming > > > back " normal " . I have had 4 EMG's since this began in July of 2004 > > > and I have had 4 MRI's and numerous blood tests. Some that have been > > > sent to Mayo. I still am not any closer in receiving a diagnosis. > > > > > > My symptoms are as follows, In July my back started cramping so bad > > > that it caused my right leg to have pain and fall asleep at times > > > (this no longer happens). Then after that happened I started having > > > such bad cramping in my calves first right then left. Also at this > > > time I have a " dimple " or maybe atrophy on my right calf. But, they > > > are watching that. I have weakness, it first started in my right > > > side and went to the left. Everything started in my legs and back > > > first and just recently I have postural shaking my hands. I can't > > > lift my hands above my hand because it gets " heavy " feeling. I walk > > > with a cane because my balance and gait are really bad and use a > > > wheelchair for long distances. In February of this year I spent a few > > > days in ICU because I had shortness of breath and felt as if > > > something was caught in my throat. That's when I ended up using my > > > nightly BiPap machine and sometimes during the day. A few weeks ago > > > we found out what this is and it's Paradoxical Vocal Cord Movement. > > > My brain is sending mixed signals to the respiratory portion of my > > > body. I have tried neurotin, zanaflex and tegretol the only thing > > > that works for me is Baclofen but I got a rash and had to discontinue > > > the use. Intermittently if I overdo things I get pains in my calves. > > > I have problems talking and talk like a frog or with " hoarseness " and > > > quiet and from time to time have swallowing problems. Just recently I > > > have acquired tongue tremors. So, it's back to the neuromuscular > > > specialist on Monday to see what he says. > > > > > > I have been told it could be possible Als, Isaac's Syndrome and > > > Benign Fascilations Syndrome. It's progressing at a pretty steady > > > rate and have been told only time will tell. At the same time I have > > > applied for social security and have yet to receive an answer and > > > also have appealed my HMO decision not to send me to Mayo to see what > > > they would say. > > > > > > Is it possible to have PLS without having " abnormal " test results? > > > > > > Thank you for reading this, sorry it's so long > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 - It sounds like you and I have a lot in common. I am 33 and I have been diagnosed with potentially PLS (right now I am being monitored of my progress). I was told that this was all in my head by several doctors....after all of my tests came back normal too. I actually had a doctor tell me there is no way I have PLS because I am too young (which I found out later that is not the case). Doctors have wanted me to go and have sleep studies done just to prove to them that I do spasm in my sleep. Needless to say...all of this constant proving has gotten annoying and frustrating. You are in the correct group to ask your questions of. These guys have been very supportive and helpful to me...and I do not know what I would have done without their advice. It is their advice I bring with me to doctors appointments so that when they say something that doesn't match what I know...I am armed to come back at them with a resounding BUT... Good luck to you...and ask me if you have any questions...I am more than willing to help. > > , > > > > Yes, it is possible. Almost all of my test results indicated nothing > wrong > > with me. I was told it " was all in my head. " I had my impressions > about the > > first neurologists I saw. My current neurologist, who diagnosed me > in May > > 1996, asked my opinion about the two I had seen before. I told him > and he > > laughed and said that I was very perceptive. I liked him from that > moment > > on. Two weeks later I had an EMG and the results of that, with the > results > > of all the other tests he had seen, indicated to him PLS. I was his > first > > patient with this disease. Guess what? He had done some research > during the > > two weeks between appointments and found that my symptoms correlated > with > > those of PLS, which he had not really heard much about until then. > > > > I wish everyone could find a neuro like him. > > > > Mike Gray > > PLS Diagnosis > > > > > > >I am 32 y/o female and have been diagnosed with an unknown > > > neurological condition. My neurologist is pretty sure that I have > > > PLS. I have a lot of the symptoms, but yet my test results are coming > > > back " normal " . I have had 4 EMG's since this began in July of 2004 > > > and I have had 4 MRI's and numerous blood tests. Some that have been > > > sent to Mayo. I still am not any closer in receiving a diagnosis. > > > > > > My symptoms are as follows, In July my back started cramping so bad > > > that it caused my right leg to have pain and fall asleep at times > > > (this no longer happens). Then after that happened I started having > > > such bad cramping in my calves first right then left. Also at this > > > time I have a " dimple " or maybe atrophy on my right calf. But, they > > > are watching that. I have weakness, it first started in my right > > > side and went to the left. Everything started in my legs and back > > > first and just recently I have postural shaking my hands. I can't > > > lift my hands above my hand because it gets " heavy " feeling. I walk > > > with a cane because my balance and gait are really bad and use a > > > wheelchair for long distances. In February of this year I spent a few > > > days in ICU because I had shortness of breath and felt as if > > > something was caught in my throat. That's when I ended up using my > > > nightly BiPap machine and sometimes during the day. A few weeks ago > > > we found out what this is and it's Paradoxical Vocal Cord Movement. > > > My brain is sending mixed signals to the respiratory portion of my > > > body. I have tried neurotin, zanaflex and tegretol the only thing > > > that works for me is Baclofen but I got a rash and had to discontinue > > > the use. Intermittently if I overdo things I get pains in my calves. > > > I have problems talking and talk like a frog or with " hoarseness " and > > > quiet and from time to time have swallowing problems. Just recently I > > > have acquired tongue tremors. So, it's back to the neuromuscular > > > specialist on Monday to see what he says. > > > > > > I have been told it could be possible Als, Isaac's Syndrome and > > > Benign Fascilations Syndrome. It's progressing at a pretty steady > > > rate and have been told only time will tell. At the same time I have > > > applied for social security and have yet to receive an answer and > > > also have appealed my HMO decision not to send me to Mayo to see what > > > they would say. > > > > > > Is it possible to have PLS without having " abnormal " test results? > > > > > > Thank you for reading this, sorry it's so long > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 I do have a question??? Why is it some days I feel like I can conquer the world and others I feel like you can just " shoot " me and get it over with? I also think weather is a big part for me, especially with my breathing. I attended my son and daughter's games this past weekend and it was cold and windy just sitting in my wheelchair (I couldn't make the long hike) I felt really achy (sp?) and tired. My fiance' has been so great with this whole thing but it's been hard on both of us and especially my family. My mother is just coming out her denial that I " m really sick. She too at one time thought it was a cold and would pass. But, as any good mother would I guess I would do the same. So my question is, am I crazy that I feel good one day and bad the next day? > > > , > > > > > > Yes, it is possible. Almost all of my test results indicated > nothing > > wrong > > > with me. I was told it " was all in my head. " I had my impressions > > about the > > > first neurologists I saw. My current neurologist, who diagnosed me > > in May > > > 1996, asked my opinion about the two I had seen before. I told him > > and he > > > laughed and said that I was very perceptive. I liked him from that > > moment > > > on. Two weeks later I had an EMG and the results of that, with the > > results > > > of all the other tests he had seen, indicated to him PLS. I was > his > > first > > > patient with this disease. Guess what? He had done some research > > during the > > > two weeks between appointments and found that my symptoms > correlated > > with > > > those of PLS, which he had not really heard much about until then. > > > > > > I wish everyone could find a neuro like him. > > > > > > Mike Gray > > > PLS Diagnosis > > > > > > > > > >I am 32 y/o female and have been diagnosed with an unknown > > > > neurological condition. My neurologist is pretty sure that I > have > > > > PLS. I have a lot of the symptoms, but yet my test results are > coming > > > > back " normal " . I have had 4 EMG's since this began in July of > 2004 > > > > and I have had 4 MRI's and numerous blood tests. Some that have > been > > > > sent to Mayo. I still am not any closer in receiving a > diagnosis. > > > > > > > > My symptoms are as follows, In July my back started cramping so > bad > > > > that it caused my right leg to have pain and fall asleep at > times > > > > (this no longer happens). Then after that happened I started > having > > > > such bad cramping in my calves first right then left. Also at > this > > > > time I have a " dimple " or maybe atrophy on my right calf. But, > they > > > > are watching that. I have weakness, it first started in my > right > > > > side and went to the left. Everything started in my legs and > back > > > > first and just recently I have postural shaking my hands. I > can't > > > > lift my hands above my hand because it gets " heavy " feeling. I > walk > > > > with a cane because my balance and gait are really bad and use a > > > > wheelchair for long distances. In February of this year I spent > a few > > > > days in ICU because I had shortness of breath and felt as if > > > > something was caught in my throat. That's when I ended up using > my > > > > nightly BiPap machine and sometimes during the day. A few weeks > ago > > > > we found out what this is and it's Paradoxical Vocal Cord > Movement. > > > > My brain is sending mixed signals to the respiratory portion of > my > > > > body. I have tried neurotin, zanaflex and tegretol the only > thing > > > > that works for me is Baclofen but I got a rash and had to > discontinue > > > > the use. Intermittently if I overdo things I get pains in my > calves. > > > > I have problems talking and talk like a frog or > with " hoarseness " and > > > > quiet and from time to time have swallowing problems. Just > recently I > > > > have acquired tongue tremors. So, it's back to the neuromuscular > > > > specialist on Monday to see what he says. > > > > > > > > I have been told it could be possible Als, Isaac's Syndrome and > > > > Benign Fascilations Syndrome. It's progressing at a pretty > steady > > > > rate and have been told only time will tell. At the same time I > have > > > > applied for social security and have yet to receive an answer > and > > > > also have appealed my HMO decision not to send me to Mayo to > see what > > > > they would say. > > > > > > > > Is it possible to have PLS without having " abnormal " test > results? > > > > > > > > Thank you for reading this, sorry it's so long > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 I do have a question??? Why is it some days I feel like I can conquer the world and others I feel like you can just " shoot " me and get it over with? I also think weather is a big part for me, especially with my breathing. I attended my son and daughter's games this past weekend and it was cold and windy just sitting in my wheelchair (I couldn't make the long hike) I felt really achy (sp?) and tired. My fiance' has been so great with this whole thing but it's been hard on both of us and especially my family. My mother is just coming out her denial that I " m really sick. She too at one time thought it was a cold and would pass. But, as any good mother would I guess I would do the same. So my question is, am I crazy that I feel good one day and bad the next day? > > > , > > > > > > Yes, it is possible. Almost all of my test results indicated > nothing > > wrong > > > with me. I was told it " was all in my head. " I had my impressions > > about the > > > first neurologists I saw. My current neurologist, who diagnosed me > > in May > > > 1996, asked my opinion about the two I had seen before. I told him > > and he > > > laughed and said that I was very perceptive. I liked him from that > > moment > > > on. Two weeks later I had an EMG and the results of that, with the > > results > > > of all the other tests he had seen, indicated to him PLS. I was > his > > first > > > patient with this disease. Guess what? He had done some research > > during the > > > two weeks between appointments and found that my symptoms > correlated > > with > > > those of PLS, which he had not really heard much about until then. > > > > > > I wish everyone could find a neuro like him. > > > > > > Mike Gray > > > PLS Diagnosis > > > > > > > > > >I am 32 y/o female and have been diagnosed with an unknown > > > > neurological condition. My neurologist is pretty sure that I > have > > > > PLS. I have a lot of the symptoms, but yet my test results are > coming > > > > back " normal " . I have had 4 EMG's since this began in July of > 2004 > > > > and I have had 4 MRI's and numerous blood tests. Some that have > been > > > > sent to Mayo. I still am not any closer in receiving a > diagnosis. > > > > > > > > My symptoms are as follows, In July my back started cramping so > bad > > > > that it caused my right leg to have pain and fall asleep at > times > > > > (this no longer happens). Then after that happened I started > having > > > > such bad cramping in my calves first right then left. Also at > this > > > > time I have a " dimple " or maybe atrophy on my right calf. But, > they > > > > are watching that. I have weakness, it first started in my > right > > > > side and went to the left. Everything started in my legs and > back > > > > first and just recently I have postural shaking my hands. I > can't > > > > lift my hands above my hand because it gets " heavy " feeling. I > walk > > > > with a cane because my balance and gait are really bad and use a > > > > wheelchair for long distances. In February of this year I spent > a few > > > > days in ICU because I had shortness of breath and felt as if > > > > something was caught in my throat. That's when I ended up using > my > > > > nightly BiPap machine and sometimes during the day. A few weeks > ago > > > > we found out what this is and it's Paradoxical Vocal Cord > Movement. > > > > My brain is sending mixed signals to the respiratory portion of > my > > > > body. I have tried neurotin, zanaflex and tegretol the only > thing > > > > that works for me is Baclofen but I got a rash and had to > discontinue > > > > the use. Intermittently if I overdo things I get pains in my > calves. > > > > I have problems talking and talk like a frog or > with " hoarseness " and > > > > quiet and from time to time have swallowing problems. Just > recently I > > > > have acquired tongue tremors. So, it's back to the neuromuscular > > > > specialist on Monday to see what he says. > > > > > > > > I have been told it could be possible Als, Isaac's Syndrome and > > > > Benign Fascilations Syndrome. It's progressing at a pretty > steady > > > > rate and have been told only time will tell. At the same time I > have > > > > applied for social security and have yet to receive an answer > and > > > > also have appealed my HMO decision not to send me to Mayo to > see what > > > > they would say. > > > > > > > > Is it possible to have PLS without having " abnormal " test > results? > > > > > > > > Thank you for reading this, sorry it's so long > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 I do have a question??? Why is it some days I feel like I can conquer the world and others I feel like you can just " shoot " me and get it over with? I also think weather is a big part for me, especially with my breathing. I attended my son and daughter's games this past weekend and it was cold and windy just sitting in my wheelchair (I couldn't make the long hike) I felt really achy (sp?) and tired. My fiance' has been so great with this whole thing but it's been hard on both of us and especially my family. My mother is just coming out her denial that I " m really sick. She too at one time thought it was a cold and would pass. But, as any good mother would I guess I would do the same. So my question is, am I crazy that I feel good one day and bad the next day? > > > , > > > > > > Yes, it is possible. Almost all of my test results indicated > nothing > > wrong > > > with me. I was told it " was all in my head. " I had my impressions > > about the > > > first neurologists I saw. My current neurologist, who diagnosed me > > in May > > > 1996, asked my opinion about the two I had seen before. I told him > > and he > > > laughed and said that I was very perceptive. I liked him from that > > moment > > > on. Two weeks later I had an EMG and the results of that, with the > > results > > > of all the other tests he had seen, indicated to him PLS. I was > his > > first > > > patient with this disease. Guess what? He had done some research > > during the > > > two weeks between appointments and found that my symptoms > correlated > > with > > > those of PLS, which he had not really heard much about until then. > > > > > > I wish everyone could find a neuro like him. > > > > > > Mike Gray > > > PLS Diagnosis > > > > > > > > > >I am 32 y/o female and have been diagnosed with an unknown > > > > neurological condition. My neurologist is pretty sure that I > have > > > > PLS. I have a lot of the symptoms, but yet my test results are > coming > > > > back " normal " . I have had 4 EMG's since this began in July of > 2004 > > > > and I have had 4 MRI's and numerous blood tests. Some that have > been > > > > sent to Mayo. I still am not any closer in receiving a > diagnosis. > > > > > > > > My symptoms are as follows, In July my back started cramping so > bad > > > > that it caused my right leg to have pain and fall asleep at > times > > > > (this no longer happens). Then after that happened I started > having > > > > such bad cramping in my calves first right then left. Also at > this > > > > time I have a " dimple " or maybe atrophy on my right calf. But, > they > > > > are watching that. I have weakness, it first started in my > right > > > > side and went to the left. Everything started in my legs and > back > > > > first and just recently I have postural shaking my hands. I > can't > > > > lift my hands above my hand because it gets " heavy " feeling. I > walk > > > > with a cane because my balance and gait are really bad and use a > > > > wheelchair for long distances. In February of this year I spent > a few > > > > days in ICU because I had shortness of breath and felt as if > > > > something was caught in my throat. That's when I ended up using > my > > > > nightly BiPap machine and sometimes during the day. A few weeks > ago > > > > we found out what this is and it's Paradoxical Vocal Cord > Movement. > > > > My brain is sending mixed signals to the respiratory portion of > my > > > > body. I have tried neurotin, zanaflex and tegretol the only > thing > > > > that works for me is Baclofen but I got a rash and had to > discontinue > > > > the use. Intermittently if I overdo things I get pains in my > calves. > > > > I have problems talking and talk like a frog or > with " hoarseness " and > > > > quiet and from time to time have swallowing problems. Just > recently I > > > > have acquired tongue tremors. So, it's back to the neuromuscular > > > > specialist on Monday to see what he says. > > > > > > > > I have been told it could be possible Als, Isaac's Syndrome and > > > > Benign Fascilations Syndrome. It's progressing at a pretty > steady > > > > rate and have been told only time will tell. At the same time I > have > > > > applied for social security and have yet to receive an answer > and > > > > also have appealed my HMO decision not to send me to Mayo to > see what > > > > they would say. > > > > > > > > Is it possible to have PLS without having " abnormal " test > results? > > > > > > > > Thank you for reading this, sorry it's so long > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 First, let me say welcome to you--and to the other recent newcomers to the group. I've been remiss in my social graces and while not pleased about the reason for your being here, I'm happy that you found this site. Without a doubt, it is a source of great comfort, encouragement, information sharing, and support. My reply to your question (below) is that I don't know why we feel really horrible some days and better on others, but we do--or at least I do. I'm also one of the ones who is very weak in the heat. I've known that for a long time. Now, I realize that humidity is just as bad for me. Even if the temperature is cold or cool, the humidity or dampness drains my strength and usually increases my pain and achiness, too. Some medical papers that I've read associate these symptoms in arthritic patients with changes in the atmospheric pressure. That makes sense to me. Dolores (PLSer in CT) ----- Original Message ----- > > Why is it some days I feel like I can conquer the world and others I > feel like you can just " shoot " me and get it over with? > So my question is, am I crazy that I feel good one day and bad the > next day? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 First, let me say welcome to you--and to the other recent newcomers to the group. I've been remiss in my social graces and while not pleased about the reason for your being here, I'm happy that you found this site. Without a doubt, it is a source of great comfort, encouragement, information sharing, and support. My reply to your question (below) is that I don't know why we feel really horrible some days and better on others, but we do--or at least I do. I'm also one of the ones who is very weak in the heat. I've known that for a long time. Now, I realize that humidity is just as bad for me. Even if the temperature is cold or cool, the humidity or dampness drains my strength and usually increases my pain and achiness, too. Some medical papers that I've read associate these symptoms in arthritic patients with changes in the atmospheric pressure. That makes sense to me. Dolores (PLSer in CT) ----- Original Message ----- > > Why is it some days I feel like I can conquer the world and others I > feel like you can just " shoot " me and get it over with? > So my question is, am I crazy that I feel good one day and bad the > next day? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 First, let me say welcome to you--and to the other recent newcomers to the group. I've been remiss in my social graces and while not pleased about the reason for your being here, I'm happy that you found this site. Without a doubt, it is a source of great comfort, encouragement, information sharing, and support. My reply to your question (below) is that I don't know why we feel really horrible some days and better on others, but we do--or at least I do. I'm also one of the ones who is very weak in the heat. I've known that for a long time. Now, I realize that humidity is just as bad for me. Even if the temperature is cold or cool, the humidity or dampness drains my strength and usually increases my pain and achiness, too. Some medical papers that I've read associate these symptoms in arthritic patients with changes in the atmospheric pressure. That makes sense to me. Dolores (PLSer in CT) ----- Original Message ----- > > Why is it some days I feel like I can conquer the world and others I > feel like you can just " shoot " me and get it over with? > So my question is, am I crazy that I feel good one day and bad the > next day? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 Hi , My entire test came back normal. I was diagnose in 2001 my neuro. Told me I would basically have to wait 4 years to see if I got any worse or if I die. If I got extremely worse it was ALS, if not, it's PLS. I wonder sometimes if they know what the hell their doing. I think Dr. Fink should hold classes and seminars for neurologist and teach them about PLS. PLS Diagnosis I am 32 y/o female and have been diagnosed with an unknown neurological condition. My neurologist is pretty sure that I have PLS. I have a lot of the symptoms, but yet my test results are coming back " normal " . I have had 4 EMG's since this began in July of 2004 and I have had 4 MRI's and numerous blood tests. Some that have been sent to Mayo. I still am not any closer in receiving a diagnosis. My symptoms are as follows, In July my back started cramping so bad that it caused my right leg to have pain and fall asleep at times (this no longer happens). Then after that happened I started having such bad cramping in my calves first right then left. Also at this time I have a " dimple " or maybe atrophy on my right calf. But, they are watching that. I have weakness, it first started in my right side and went to the left. Everything started in my legs and back first and just recently I have postural shaking my hands. I can't lift my hands above my hand because it gets " heavy " feeling. I walk with a cane because my balance and gait are really bad and use a wheelchair for long distances. In February of this year I spent a few days in ICU because I had shortness of breath and felt as if something was caught in my throat. That's when I ended up using my nightly BiPap machine and sometimes during the day. A few weeks ago we found out what this is and it's Paradoxical Vocal Cord Movement. My brain is sending mixed signals to the respiratory portion of my body. I have tried neurotin, zanaflex and tegretol the only thing that works for me is Baclofen but I got a rash and had to discontinue the use. Intermittently if I overdo things I get pains in my calves. I have problems talking and talk like a frog or with " hoarseness " and quiet and from time to time have swallowing problems. Just recently I have acquired tongue tremors. So, it's back to the neuromuscular specialist on Monday to see what he says. I have been told it could be possible Als, Isaac's Syndrome and Benign Fascilations Syndrome. It's progressing at a pretty steady rate and have been told only time will tell. At the same time I have applied for social security and have yet to receive an answer and also have appealed my HMO decision not to send me to Mayo to see what they would say. Is it possible to have PLS without having " abnormal " test results? Thank you for reading this, sorry it's so long Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 Hi , My entire test came back normal. I was diagnose in 2001 my neuro. Told me I would basically have to wait 4 years to see if I got any worse or if I die. If I got extremely worse it was ALS, if not, it's PLS. I wonder sometimes if they know what the hell their doing. I think Dr. Fink should hold classes and seminars for neurologist and teach them about PLS. PLS Diagnosis I am 32 y/o female and have been diagnosed with an unknown neurological condition. My neurologist is pretty sure that I have PLS. I have a lot of the symptoms, but yet my test results are coming back " normal " . I have had 4 EMG's since this began in July of 2004 and I have had 4 MRI's and numerous blood tests. Some that have been sent to Mayo. I still am not any closer in receiving a diagnosis. My symptoms are as follows, In July my back started cramping so bad that it caused my right leg to have pain and fall asleep at times (this no longer happens). Then after that happened I started having such bad cramping in my calves first right then left. Also at this time I have a " dimple " or maybe atrophy on my right calf. But, they are watching that. I have weakness, it first started in my right side and went to the left. Everything started in my legs and back first and just recently I have postural shaking my hands. I can't lift my hands above my hand because it gets " heavy " feeling. I walk with a cane because my balance and gait are really bad and use a wheelchair for long distances. In February of this year I spent a few days in ICU because I had shortness of breath and felt as if something was caught in my throat. That's when I ended up using my nightly BiPap machine and sometimes during the day. A few weeks ago we found out what this is and it's Paradoxical Vocal Cord Movement. My brain is sending mixed signals to the respiratory portion of my body. I have tried neurotin, zanaflex and tegretol the only thing that works for me is Baclofen but I got a rash and had to discontinue the use. Intermittently if I overdo things I get pains in my calves. I have problems talking and talk like a frog or with " hoarseness " and quiet and from time to time have swallowing problems. Just recently I have acquired tongue tremors. So, it's back to the neuromuscular specialist on Monday to see what he says. I have been told it could be possible Als, Isaac's Syndrome and Benign Fascilations Syndrome. It's progressing at a pretty steady rate and have been told only time will tell. At the same time I have applied for social security and have yet to receive an answer and also have appealed my HMO decision not to send me to Mayo to see what they would say. Is it possible to have PLS without having " abnormal " test results? Thank you for reading this, sorry it's so long Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 Hi , My entire test came back normal. I was diagnose in 2001 my neuro. Told me I would basically have to wait 4 years to see if I got any worse or if I die. If I got extremely worse it was ALS, if not, it's PLS. I wonder sometimes if they know what the hell their doing. I think Dr. Fink should hold classes and seminars for neurologist and teach them about PLS. PLS Diagnosis I am 32 y/o female and have been diagnosed with an unknown neurological condition. My neurologist is pretty sure that I have PLS. I have a lot of the symptoms, but yet my test results are coming back " normal " . I have had 4 EMG's since this began in July of 2004 and I have had 4 MRI's and numerous blood tests. Some that have been sent to Mayo. I still am not any closer in receiving a diagnosis. My symptoms are as follows, In July my back started cramping so bad that it caused my right leg to have pain and fall asleep at times (this no longer happens). Then after that happened I started having such bad cramping in my calves first right then left. Also at this time I have a " dimple " or maybe atrophy on my right calf. But, they are watching that. I have weakness, it first started in my right side and went to the left. Everything started in my legs and back first and just recently I have postural shaking my hands. I can't lift my hands above my hand because it gets " heavy " feeling. I walk with a cane because my balance and gait are really bad and use a wheelchair for long distances. In February of this year I spent a few days in ICU because I had shortness of breath and felt as if something was caught in my throat. That's when I ended up using my nightly BiPap machine and sometimes during the day. A few weeks ago we found out what this is and it's Paradoxical Vocal Cord Movement. My brain is sending mixed signals to the respiratory portion of my body. I have tried neurotin, zanaflex and tegretol the only thing that works for me is Baclofen but I got a rash and had to discontinue the use. Intermittently if I overdo things I get pains in my calves. I have problems talking and talk like a frog or with " hoarseness " and quiet and from time to time have swallowing problems. Just recently I have acquired tongue tremors. So, it's back to the neuromuscular specialist on Monday to see what he says. I have been told it could be possible Als, Isaac's Syndrome and Benign Fascilations Syndrome. It's progressing at a pretty steady rate and have been told only time will tell. At the same time I have applied for social security and have yet to receive an answer and also have appealed my HMO decision not to send me to Mayo to see what they would say. Is it possible to have PLS without having " abnormal " test results? Thank you for reading this, sorry it's so long Quote Link to comment Share on other sites More sharing options...
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