Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 Do you also find that when you take a bath or get in a hot tub that your muscles turn to moosh? I do and sometimes I get out of the bath and have to sit on the floor for a few mintues because I'm so weak and have to readjust. Just curious IN > , > > 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 Do you also find that when you take a bath or get in a hot tub that your muscles turn to moosh? I do and sometimes I get out of the bath and have to sit on the floor for a few mintues because I'm so weak and have to readjust. Just curious IN > , > > 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 am discouraged as to the way the meds haven't worked or I wasn't patient (which could be half of problem) but I have decided to deal with my shaking (which is on and off depending on me being tired out or just goes on it's own) Anyway, I am sick of having the side effects of meds. I will probably go back on the baclofen but my allergist/asthma specialist (have asthma too) has decided to try me on this again. I have to go to the local hospital in chicago and go for four hours for four weeks and each time go up in dose to where I was to see if I have the same reaction to the Baclofen again. If I don't I would love to go back on it because it was working. So, I am trying to decide if I want to go back on this again and go through the trouble. I'm going back to UIC on Monday afternoon and we'll see what he has to say about my new symptoms. Thankx for listening. IN > > 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 am discouraged as to the way the meds haven't worked or I wasn't patient (which could be half of problem) but I have decided to deal with my shaking (which is on and off depending on me being tired out or just goes on it's own) Anyway, I am sick of having the side effects of meds. I will probably go back on the baclofen but my allergist/asthma specialist (have asthma too) has decided to try me on this again. I have to go to the local hospital in chicago and go for four hours for four weeks and each time go up in dose to where I was to see if I have the same reaction to the Baclofen again. If I don't I would love to go back on it because it was working. So, I am trying to decide if I want to go back on this again and go through the trouble. I'm going back to UIC on Monday afternoon and we'll see what he has to say about my new symptoms. Thankx for listening. IN > > 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 Sooo you can have normal and abnormal test results and still have PLS? IN > 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 Sooo you can have normal and abnormal test results and still have PLS? IN > 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 Sooo you can have normal and abnormal test results and still have PLS? IN > 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 , I am bad, very bad in the heat - throw in some humidity and you have a real basket case on hand. After a hot tub soak, i often need help getting out, walking and then have to lie down for a while before i can function again. A couple of years ago i asked my doc about this and he said just as the heat or cold can be bad for MSers it can be as well for us because of the common 's'clerosis in our diseases. He said the neurons react abnormally because of the sclerosis. Made sense to me. So, it begs the question, why do i soak in hot tubs at all.....the answer is - trying to ease my sore and tight muscles. one of those d-m--d if you do, d-m--d if you don'ts... Colleen > > , > > > > 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 am bad, very bad in the heat - throw in some humidity and you have a real basket case on hand. After a hot tub soak, i often need help getting out, walking and then have to lie down for a while before i can function again. A couple of years ago i asked my doc about this and he said just as the heat or cold can be bad for MSers it can be as well for us because of the common 's'clerosis in our diseases. He said the neurons react abnormally because of the sclerosis. Made sense to me. So, it begs the question, why do i soak in hot tubs at all.....the answer is - trying to ease my sore and tight muscles. one of those d-m--d if you do, d-m--d if you don'ts... Colleen > > , > > > > 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 am bad, very bad in the heat - throw in some humidity and you have a real basket case on hand. After a hot tub soak, i often need help getting out, walking and then have to lie down for a while before i can function again. A couple of years ago i asked my doc about this and he said just as the heat or cold can be bad for MSers it can be as well for us because of the common 's'clerosis in our diseases. He said the neurons react abnormally because of the sclerosis. Made sense to me. So, it begs the question, why do i soak in hot tubs at all.....the answer is - trying to ease my sore and tight muscles. one of those d-m--d if you do, d-m--d if you don'ts... Colleen > > , > > > > 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 5, 2005 Report Share Posted May 5, 2005 Hi , Many of your symptoms are like mine. I, in hindsight, have had PLS for 8-10 years. It was slow at first, but the last 2 years have shown a rapid progression. And YES...my neurologists have said that normal MRIs and EMGs etc are very common with PLS. It is mailny a disease of clinical diagnosis,,...not based so much on tests. I am 47 years old, so i was about 37 when my symptoms began. Many people have a very slow, gradual progression it seems. mine seems to be playing leap-frog this last 2 years . But my neuro says that can certainlt happen....and then it can slow right down again. Hang in there. You aren't alone anymore. We are all with you. Di....PLS.....Canada > 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 5, 2005 Report Share Posted May 5, 2005 Hi , Many of your symptoms are like mine. I, in hindsight, have had PLS for 8-10 years. It was slow at first, but the last 2 years have shown a rapid progression. And YES...my neurologists have said that normal MRIs and EMGs etc are very common with PLS. It is mailny a disease of clinical diagnosis,,...not based so much on tests. I am 47 years old, so i was about 37 when my symptoms began. Many people have a very slow, gradual progression it seems. mine seems to be playing leap-frog this last 2 years . But my neuro says that can certainlt happen....and then it can slow right down again. Hang in there. You aren't alone anymore. We are all with you. Di....PLS.....Canada > 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 5, 2005 Report Share Posted May 5, 2005 Hi , Many of your symptoms are like mine. I, in hindsight, have had PLS for 8-10 years. It was slow at first, but the last 2 years have shown a rapid progression. And YES...my neurologists have said that normal MRIs and EMGs etc are very common with PLS. It is mailny a disease of clinical diagnosis,,...not based so much on tests. I am 47 years old, so i was about 37 when my symptoms began. Many people have a very slow, gradual progression it seems. mine seems to be playing leap-frog this last 2 years . But my neuro says that can certainlt happen....and then it can slow right down again. Hang in there. You aren't alone anymore. We are all with you. Di....PLS.....Canada > 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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