Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 Hi, I'm . This is all very new to me. I'm going through testing right now to get a diagnosis. My symptoms started with a weakness in my right hand, and then many months later, I started getting fasciculations and cramps in my lower left leg and foot. This quickly moved to my right leg, and now I have constant fasciculations and cramps in my legs (below the knees) and in my feet. They often keep me up at night. I had been basically ignoring the symptoms until I was in a car wreck and went to the Dr. for treatment of whiplash. He tested my reflexes and they were extremely hyper in the tendons. Since then, my reflexes have been tested twice more and they are repeatedly hyper. I saw my neurologist last week and he gave me three options for diagnosis. Hormones (I'm 43), MS or ALS. Needless to say I'm very scared. I had the evoked potential tests run yesterday, a complete physical and blood tests are scheduled for today, I have a nerve conduction velocity test tomorrow and a brain and cervical spine MRI on Thursday. Can someone share their experiences with me in terms of symptoms, and how long it took to get a diagnosis. I'm okay until I think about my kids (9 and 6), and then I lose it. If anyone can provide any hope encouragement or information that tells me that what I'm experience can't be ALS I would be grateful. To make this whole thing a bit ironic, I'm a research scientist who runs a neurodegeneration program for a biotech company. One of my Main projects is ALS. Check out the news link below. My grant for ALS research just got renewed.... http://www.alsa.org/news/article.cfm?id=815 Thanks, New Member - Hello Hello, My name is and my mother was recently diagnosed with PLS. You will see by my message below when I asked to subscribe, some of the details of her condition. I'm 38 and have been struggling along with her watching her go from dancing around the kitchen, to holding onto walls, to tripping out in the yard over nothing, to using a cane, then two canes, then finally a walker. I take her out occasionally and I push her in a wheel chair. She hates losing her independence and I hate that she has lost a lot of it. I do housework for her, shopping, doctor's appointments and phone calls. My brothers are of no help and one lives with her. Well, he does help a little, but I do the majority. At least he's there when she falls and I haven't had to speed to her house to pick her up as often as I used to. No one I know in my circle of friends has a parent who has anything near PLS. They may have heart conditions (which my mother also has) and cancer issues, but those, to me, are treatable and possibly reversible in some ways. PLS won't go away. My uncle (my mother's next oldest brother), died of ALS. I'm happy to know that my mother has the lesser end of it, but it's still very frustrating and sad. Thanks for letting me babble on. I'm glad we finally have a diagnosis and that perhaps I can chat with others and children of those who are inflicted with this awful condition. My husband doesn't understand it. He thinks his parents are immortal as far as I can tell. He sure is going to be disappointed when they're gone, isn't he. Again, thank you and I look forward to getting to know some, if not all of you. Have a safe day =============================================================== I would like to subscribe to your PLS Friends discussion group. My mother has PLS and was just diagnosed, finally, after 14 years of compounding symptoms. She is only 67. She has been through the gamut of tests and has seen doctor upon doctor. I guess this is it and this is what we have to deal with, what she has to live with. If she had been treated or diagnosed earlier, I wonder if she would be in better condition than she is now. I've looked at some of the photos of those on your site who have this rotten, disabling condition and everyone looks just as my mother does - completely normal. It isn't until she speaks or walks (using her walker) or has a throat spasm that you'd know anything is wrong with her. It's very sad. And as her only daughter, the caregiving falls to me. It's very stressful. That said, if there are any other children of parents with PLS, I would love to be in touch with them as well. Thank you. Sincerely, Dunn hed67@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 Hi , Welcome to PLS-Friends. You mentioned that your Mom has Throat Spasams. I get Throat Spasams, and my air way shuts off. Is this the same with your Mom? Agin Welcome. -- In PLS-FRIENDS , " hed920 " wrote: > > Hello, > > My name is and my mother was recently diagnosed with PLS. > You will see by my message below when I asked to subscribe, some of > the details of her condition. I'm 38 and have been struggling along > with her watching her go from dancing around the kitchen, to holding > onto walls, to tripping out in the yard over nothing, to using a > cane, then two canes, then finally a walker. I take her out > occasionally and I push her in a wheel chair. She hates losing her > independence and I hate that she has lost a lot of it. I do > housework for her, shopping, doctor's appointments and phone calls. > My brothers are of no help and one lives with her. Well, he does > help a little, but I do the majority. At least he's there when she > falls and I haven't had to speed to her house to pick her up as > often as I used to. No one I know in my circle of friends has a > parent who has anything near PLS. They may have heart conditions > (which my mother also has) and cancer issues, but those, to me, are > treatable and possibly reversible in some ways. PLS won't go away. > My uncle (my mother's next oldest brother), died of ALS. I'm happy > to know that my mother has the lesser end of it, but it's still very > frustrating and sad. > > Thanks for letting me babble on. I'm glad we finally have a > diagnosis and that perhaps I can chat with others and children of > those who are inflicted with this awful condition. My husband > doesn't understand it. He thinks his parents are immortal as far as > I can tell. He sure is going to be disappointed when they're gone, > isn't he. > > Again, thank you and I look forward to getting to know some, if not > all of you. > > Have a safe day > > > =============================================================== > > I would like to subscribe to your PLS Friends discussion group. My > mother has PLS and was just diagnosed, finally, after 14 years of > compounding symptoms. She is only 67. She has been through the > gamut of tests and has seen doctor upon doctor. I guess this is it > and this is what we have to deal with, what she has to live with. > If she had been treated or diagnosed earlier, I wonder if she would > be in better condition than she is now. I've looked at some of the > photos of those on your site who have this rotten, disabling > condition and everyone looks just as my mother does - completely > normal. It isn't until she speaks or walks (using her walker) or > has a throat spasm that you'd know anything is wrong with her. It's > very sad. And as her only daughter, the caregiving falls to me. > It's very stressful. That said, if there are any other children of > parents with PLS, I would love to be in touch with them as well. > > Thank you. > > Sincerely, > Dunn > hed67@c... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 Hi , Welcome to PLS-Friends. You mentioned that your Mom has Throat Spasams. I get Throat Spasams, and my air way shuts off. Is this the same with your Mom? Agin Welcome. -- In PLS-FRIENDS , " hed920 " wrote: > > Hello, > > My name is and my mother was recently diagnosed with PLS. > You will see by my message below when I asked to subscribe, some of > the details of her condition. I'm 38 and have been struggling along > with her watching her go from dancing around the kitchen, to holding > onto walls, to tripping out in the yard over nothing, to using a > cane, then two canes, then finally a walker. I take her out > occasionally and I push her in a wheel chair. She hates losing her > independence and I hate that she has lost a lot of it. I do > housework for her, shopping, doctor's appointments and phone calls. > My brothers are of no help and one lives with her. Well, he does > help a little, but I do the majority. At least he's there when she > falls and I haven't had to speed to her house to pick her up as > often as I used to. No one I know in my circle of friends has a > parent who has anything near PLS. They may have heart conditions > (which my mother also has) and cancer issues, but those, to me, are > treatable and possibly reversible in some ways. PLS won't go away. > My uncle (my mother's next oldest brother), died of ALS. I'm happy > to know that my mother has the lesser end of it, but it's still very > frustrating and sad. > > Thanks for letting me babble on. I'm glad we finally have a > diagnosis and that perhaps I can chat with others and children of > those who are inflicted with this awful condition. My husband > doesn't understand it. He thinks his parents are immortal as far as > I can tell. He sure is going to be disappointed when they're gone, > isn't he. > > Again, thank you and I look forward to getting to know some, if not > all of you. > > Have a safe day > > > =============================================================== > > I would like to subscribe to your PLS Friends discussion group. My > mother has PLS and was just diagnosed, finally, after 14 years of > compounding symptoms. She is only 67. She has been through the > gamut of tests and has seen doctor upon doctor. I guess this is it > and this is what we have to deal with, what she has to live with. > If she had been treated or diagnosed earlier, I wonder if she would > be in better condition than she is now. I've looked at some of the > photos of those on your site who have this rotten, disabling > condition and everyone looks just as my mother does - completely > normal. It isn't until she speaks or walks (using her walker) or > has a throat spasm that you'd know anything is wrong with her. It's > very sad. And as her only daughter, the caregiving falls to me. > It's very stressful. That said, if there are any other children of > parents with PLS, I would love to be in touch with them as well. > > Thank you. > > Sincerely, > Dunn > hed67@c... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 Hi It is going to take alot of patience and understanding to help your Mom on everyones part including your Brother who lives with her .He needs to take on responsibilities . Dont try to do this by yourself ,as this will only cause resentment . she needs to be resourceful in finding ways to cope think of what she needs like handrails, moving things down where she dosent have to reach way up get a raised toilet seat keep plenty of bandades around move things out of the way so she doesnt have to negoiate around them .Think of it this way what if it were you that had this? would you want to keep your dignity?Yes She sounds as if she has a low progression .I fall alot but i heal fast and i get back up and try again .We all need each other and someone always ends up doing the lions share but that makes you a bigger person . GEO > > Hello, > > My name is and my mother was recently diagnosed with PLS. > You will see by my message below when I asked to subscribe, some of > the details of her condition. I'm 38 and have been struggling along > with her watching her go from dancing around the kitchen, to holding > onto walls, to tripping out in the yard over nothing, to using a > cane, then two canes, then finally a walker. I take her out > occasionally and I push her in a wheel chair. She hates losing her > independence and I hate that she has lost a lot of it. I do > housework for her, shopping, doctor's appointments and phone calls. > My brothers are of no help and one lives with her. Well, he does > help a little, but I do the majority. At least he's there when she > falls and I haven't had to speed to her house to pick her up as > often as I used to. No one I know in my circle of friends has a > parent who has anything near PLS. They may have heart conditions > (which my mother also has) and cancer issues, but those, to me, are > treatable and possibly reversible in some ways. PLS won't go away. > My uncle (my mother's next oldest brother), died of ALS. I'm happy > to know that my mother has the lesser end of it, but it's still very > frustrating and sad. > > Thanks for letting me babble on. I'm glad we finally have a > diagnosis and that perhaps I can chat with others and children of > those who are inflicted with this awful condition. My husband > doesn't understand it. He thinks his parents are immortal as far as > I can tell. He sure is going to be disappointed when they're gone, > isn't he. > > Again, thank you and I look forward to getting to know some, if not > all of you. > > Have a safe day > > > =============================================================== > > I would like to subscribe to your PLS Friends discussion group. My > mother has PLS and was just diagnosed, finally, after 14 years of > compounding symptoms. She is only 67. She has been through the > gamut of tests and has seen doctor upon doctor. I guess this is it > and this is what we have to deal with, what she has to live with. > If she had been treated or diagnosed earlier, I wonder if she would > be in better condition than she is now. I've looked at some of the > photos of those on your site who have this rotten, disabling > condition and everyone looks just as my mother does - completely > normal. It isn't until she speaks or walks (using her walker) or > has a throat spasm that you'd know anything is wrong with her. It's > very sad. And as her only daughter, the caregiving falls to me. > It's very stressful. That said, if there are any other children of > parents with PLS, I would love to be in touch with them as well. > > Thank you. > > Sincerely, > Dunn > hed67@c... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 Hi , and welcome! How long ago did your first symptom begin? I have had my symptoms going on almost 11 years now and still no confirmed diagnosis. I am 48. We all understand how scared you are and what you are going thru. It still scares me that I have no diagnosis but looking at the timeframe of my onset of symptoms, its now highly unlikely that I have ALS. You are quite young and its also highly unlikely that you would have ALS. I hope that makes you feel better. Maureen (Australia) > > Hi, > > I'm . This is all very new to me. I'm going through testing right > now to get a diagnosis. My symptoms started with a weakness in my right > hand, and then many months later, I started getting fasciculations and > cramps in my lower left leg and foot. This quickly moved to my right > leg, and now I have constant fasciculations and cramps in my legs (below > the knees) and in my feet. They often keep me up at night. > > > > I had been basically ignoring the symptoms until I was in a car wreck > and went to the Dr. for treatment of whiplash. He tested my reflexes > and they were extremely hyper in the tendons. Since then, my reflexes > have been tested twice more and they are repeatedly hyper. I saw my > neurologist last week and he gave me three options for diagnosis. > Hormones (I'm 43), MS or ALS. Needless to say I'm very scared. I had > the evoked potential tests run yesterday, a complete physical and blood > tests are scheduled for today, I have a nerve conduction velocity test > tomorrow and a brain and cervical spine MRI on Thursday. > > > > Can someone share their experiences with me in terms of symptoms, and > how long it took to get a diagnosis. I'm okay until I think about my > kids (9 and 6), and then I lose it. If anyone can provide any hope > encouragement or information that tells me that what I'm experience > can't be ALS I would be grateful. > > > > To make this whole thing a bit ironic, I'm a research scientist who runs > a neurodegeneration program for a biotech company. One of my Main > projects is ALS. Check out the news link below. My grant for ALS > research just got renewed.... > > > > http://www.alsa.org/news/article.cfm?id=815 > > > > Thanks, > > > > > > New Member - Hello > > > > Hello, > > My name is and my mother was recently diagnosed with PLS. > You will see by my message below when I asked to subscribe, some of > the details of her condition. I'm 38 and have been struggling along > with her watching her go from dancing around the kitchen, to holding > onto walls, to tripping out in the yard over nothing, to using a > cane, then two canes, then finally a walker. I take her out > occasionally and I push her in a wheel chair. She hates losing her > independence and I hate that she has lost a lot of it. I do > housework for her, shopping, doctor's appointments and phone calls. > My brothers are of no help and one lives with her. Well, he does > help a little, but I do the majority. At least he's there when she > falls and I haven't had to speed to her house to pick her up as > often as I used to. No one I know in my circle of friends has a > parent who has anything near PLS. They may have heart conditions > (which my mother also has) and cancer issues, but those, to me, are > treatable and possibly reversible in some ways. PLS won't go away. > My uncle (my mother's next oldest brother), died of ALS. I'm happy > to know that my mother has the lesser end of it, but it's still very > frustrating and sad. > > Thanks for letting me babble on. I'm glad we finally have a > diagnosis and that perhaps I can chat with others and children of > those who are inflicted with this awful condition. My husband > doesn't understand it. He thinks his parents are immortal as far as > I can tell. He sure is going to be disappointed when they're gone, > isn't he. > > Again, thank you and I look forward to getting to know some, if not > all of you. > > Have a safe day > > > =============================================================== > > I would like to subscribe to your PLS Friends discussion group. My > mother has PLS and was just diagnosed, finally, after 14 years of > compounding symptoms. She is only 67. She has been through the > gamut of tests and has seen doctor upon doctor. I guess this is it > and this is what we have to deal with, what she has to live with. > If she had been treated or diagnosed earlier, I wonder if she would > be in better condition than she is now. I've looked at some of the > photos of those on your site who have this rotten, disabling > condition and everyone looks just as my mother does - completely > normal. It isn't until she speaks or walks (using her walker) or > has a throat spasm that you'd know anything is wrong with her. It's > very sad. And as her only daughter, the caregiving falls to me. > It's very stressful. That said, if there are any other children of > parents with PLS, I would love to be in touch with them as well. > > Thank you. > > Sincerely, > Dunn > hed67@c... > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 Hello , Sorry for you and your Mom. You'll be glad you found (us) PLS-Friends. There are several co-dependent people here. I'm sure you will hear from them. You'll get all the info you need about this debilitating thing we have. We seem to give one another more info than any neuro has. We also understand when one of us has to " vent. " Stay with " Friends " and learn. At this point there isn't anything near a cure. Our prayers are what we count on. I hope your's will help you and your Mom. Where do you live? Sometimes you have a Friend around the corner, with whom you can talk to. Connie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 > > > > Hello, > > > > My name is and my mother was recently diagnosed with PLS. > > You will see by my message below when I asked to subscribe, some > of > > the details of her condition. I'm 38 and have been struggling > along > > with her watching her go from dancing around the kitchen, to > holding > > onto walls, to tripping out in the yard over nothing, to using a > > cane, then two canes, then finally a walker. I take her out > > occasionally and I push her in a wheel chair. She hates losing > her > > independence and I hate that she has lost a lot of it. I do > > housework for her, shopping, doctor's appointments and phone > calls. > > My brothers are of no help and one lives with her. Well, he does > > help a little, but I do the majority. At least he's there when > she > > falls and I haven't had to speed to her house to pick her up as > > often as I used to. No one I know in my circle of friends has a > > parent who has anything near PLS. They may have heart conditions > > (which my mother also has) and cancer issues, but those, to me, > are > > treatable and possibly reversible in some ways. PLS won't go > away. > > My uncle (my mother's next oldest brother), died of ALS. I'm > happy > > to know that my mother has the lesser end of it, but it's still > very > > frustrating and sad. > > > > Thanks for letting me babble on. I'm glad we finally have a > > diagnosis and that perhaps I can chat with others and children of > > those who are inflicted with this awful condition. My husband > > doesn't understand it. He thinks his parents are immortal as far > as > > I can tell. He sure is going to be disappointed when they're > gone, > > isn't he. > > > > Again, thank you and I look forward to getting to know some, if > not > > all of you. > > > > Have a safe day > > > > > > =============================================================== > > > > I would like to subscribe to your PLS Friends discussion group. > My > > mother has PLS and was just diagnosed, finally, after 14 years of > > compounding symptoms. She is only 67. She has been through the > > gamut of tests and has seen doctor upon doctor. I guess this is > it > > and this is what we have to deal with, what she has to live with. > > If she had been treated or diagnosed earlier, I wonder if she > would > > be in better condition than she is now. I've looked at some of > the > > photos of those on your site who have this rotten, disabling > > condition and everyone looks just as my mother does - completely > > normal. It isn't until she speaks or walks (using her walker) or > > has a throat spasm that you'd know anything is wrong with her. > It's > > very sad. And as her only daughter, the caregiving falls to me. > > It's very stressful. That said, if there are any other children > of > > parents with PLS, I would love to be in touch with them as well. > > > > Thank you. > > > > Sincerely, > > Dunn > > hed67@c... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 Hi , Thank you for the welcome and from everyone else too! Yes, sometimes my mother's airway shuts off and it's usually when she's laughing or eating and starts to choke. It's pretty scary. What do you do when you have this happen to you? Are you able to gain control of your breath again? > > > > Hello, > > > > My name is and my mother was recently diagnosed with PLS. > > You will see by my message below when I asked to subscribe, some > of > > the details of her condition. I'm 38 and have been struggling > along > > with her watching her go from dancing around the kitchen, to > holding > > onto walls, to tripping out in the yard over nothing, to using a > > cane, then two canes, then finally a walker. I take her out > > occasionally and I push her in a wheel chair. She hates losing > her > > independence and I hate that she has lost a lot of it. I do > > housework for her, shopping, doctor's appointments and phone > calls. > > My brothers are of no help and one lives with her. Well, he does > > help a little, but I do the majority. At least he's there when > she > > falls and I haven't had to speed to her house to pick her up as > > often as I used to. No one I know in my circle of friends has a > > parent who has anything near PLS. They may have heart conditions > > (which my mother also has) and cancer issues, but those, to me, > are > > treatable and possibly reversible in some ways. PLS won't go > away. > > My uncle (my mother's next oldest brother), died of ALS. I'm > happy > > to know that my mother has the lesser end of it, but it's still > very > > frustrating and sad. > > > > Thanks for letting me babble on. I'm glad we finally have a > > diagnosis and that perhaps I can chat with others and children of > > those who are inflicted with this awful condition. My husband > > doesn't understand it. He thinks his parents are immortal as far > as > > I can tell. He sure is going to be disappointed when they're > gone, > > isn't he. > > > > Again, thank you and I look forward to getting to know some, if > not > > all of you. > > > > Have a safe day > > > > > > =============================================================== > > > > I would like to subscribe to your PLS Friends discussion group. > My > > mother has PLS and was just diagnosed, finally, after 14 years of > > compounding symptoms. She is only 67. She has been through the > > gamut of tests and has seen doctor upon doctor. I guess this is > it > > and this is what we have to deal with, what she has to live with. > > If she had been treated or diagnosed earlier, I wonder if she > would > > be in better condition than she is now. I've looked at some of > the > > photos of those on your site who have this rotten, disabling > > condition and everyone looks just as my mother does - completely > > normal. It isn't until she speaks or walks (using her walker) or > > has a throat spasm that you'd know anything is wrong with her. > It's > > very sad. And as her only daughter, the caregiving falls to me. > > It's very stressful. That said, if there are any other children > of > > parents with PLS, I would love to be in touch with them as well. > > > > Thank you. > > > > Sincerely, > > Dunn > > hed67@c... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 Hi , Knowing what I know now about my mother's condition (after 12 years of searching for a diagnosis), I would ask your neuro. about PLS - definitely. If you can get that out of the way, then you can move on and know that you're going to be around for your children for a very long time. At first, my mother started feeling a strange tingling in her right hand/arm and we thought it might be carpal tunnel syndrome. She then started tripping and feeling as though she was falling backward. She had leg cramps too but thought it was from Lipitor for her cholesterol. She'd have these fits of laughter that we all thought was just her getting a really good sense of humor. It was all part of her symptoms. She takes Clonazepam and Clonidine for spasticity and flexibility. You're in the early stages it seems, but I think if my mom had been on the right medication years ago, she'd be in better shape now. Everyone here seems so nice. I'm sure you'll find lots of good information here. I already have. Wishing you luck and good days. > > Hi, > > I'm . This is all very new to me. I'm going through testing right > now to get a diagnosis. My symptoms started with a weakness in my right > hand, and then many months later, I started getting fasciculations and > cramps in my lower left leg and foot. This quickly moved to my right > leg, and now I have constant fasciculations and cramps in my legs (below > the knees) and in my feet. They often keep me up at night. > > > > I had been basically ignoring the symptoms until I was in a car wreck > and went to the Dr. for treatment of whiplash. He tested my reflexes > and they were extremely hyper in the tendons. Since then, my reflexes > have been tested twice more and they are repeatedly hyper. I saw my > neurologist last week and he gave me three options for diagnosis. > Hormones (I'm 43), MS or ALS. Needless to say I'm very scared. I had > the evoked potential tests run yesterday, a complete physical and blood > tests are scheduled for today, I have a nerve conduction velocity test > tomorrow and a brain and cervical spine MRI on Thursday. > > > > Can someone share their experiences with me in terms of symptoms, and > how long it took to get a diagnosis. I'm okay until I think about my > kids (9 and 6), and then I lose it. If anyone can provide any hope > encouragement or information that tells me that what I'm experience > can't be ALS I would be grateful. > > > > To make this whole thing a bit ironic, I'm a research scientist who runs > a neurodegeneration program for a biotech company. One of my Main > projects is ALS. Check out the news link below. My grant for ALS > research just got renewed.... > > > > http://www.alsa.org/news/article.cfm?id=815 > > > > Thanks, > > > > > > New Member - Hello > > > > Hello, > > My name is and my mother was recently diagnosed with PLS. > You will see by my message below when I asked to subscribe, some of > the details of her condition. I'm 38 and have been struggling along > with her watching her go from dancing around the kitchen, to holding > onto walls, to tripping out in the yard over nothing, to using a > cane, then two canes, then finally a walker. I take her out > occasionally and I push her in a wheel chair. She hates losing her > independence and I hate that she has lost a lot of it. I do > housework for her, shopping, doctor's appointments and phone calls. > My brothers are of no help and one lives with her. Well, he does > help a little, but I do the majority. At least he's there when she > falls and I haven't had to speed to her house to pick her up as > often as I used to. No one I know in my circle of friends has a > parent who has anything near PLS. They may have heart conditions > (which my mother also has) and cancer issues, but those, to me, are > treatable and possibly reversible in some ways. PLS won't go away. > My uncle (my mother's next oldest brother), died of ALS. I'm happy > to know that my mother has the lesser end of it, but it's still very > frustrating and sad. > > Thanks for letting me babble on. I'm glad we finally have a > diagnosis and that perhaps I can chat with others and children of > those who are inflicted with this awful condition. My husband > doesn't understand it. He thinks his parents are immortal as far as > I can tell. He sure is going to be disappointed when they're gone, > isn't he. > > Again, thank you and I look forward to getting to know some, if not > all of you. > > Have a safe day > > > =============================================================== > > I would like to subscribe to your PLS Friends discussion group. My > mother has PLS and was just diagnosed, finally, after 14 years of > compounding symptoms. She is only 67. She has been through the > gamut of tests and has seen doctor upon doctor. I guess this is it > and this is what we have to deal with, what she has to live with. > If she had been treated or diagnosed earlier, I wonder if she would > be in better condition than she is now. I've looked at some of the > photos of those on your site who have this rotten, disabling > condition and everyone looks just as my mother does - completely > normal. It isn't until she speaks or walks (using her walker) or > has a throat spasm that you'd know anything is wrong with her. It's > very sad. And as her only daughter, the caregiving falls to me. > It's very stressful. That said, if there are any other children of > parents with PLS, I would love to be in touch with them as well. > > Thank you. > > Sincerely, > Dunn > hed67@c... > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2006 Report Share Posted January 13, 2006 Hi , I hope your testing turns out negative for MND. I too ignored symptoms for a couple of years as they were sporadic and inconsistent. I was Dx with ALS in 12/2000 with symptoms starting in early '97. I started the journey to Dx in September or October of 2000 and had a definitive Dx within 3 months. I saw a local neurologist who referred me to an ALS specialist who confirmed the dx. My symptoms are more closely related to PLS as my involvement is mainly upper motor neuron. I am still able to walk with a walker as my strength is fine, but spasticity and no balance is a big problem. The only lower motor neuron involvement was in my tongue. I'm 47 now and have 2 boys ages 14 and 11 so my kids were the same age as yours when I was Dx'd. I am also very hyperreflexive. Are you in the northeast? Make sure the neuro you see is familiar with MND. I'm sorry I couldn't be more assuring that it isn't ALS, but there is another yahoo group called " Living with ALS " where you can find a wonderful support group should you need to. I hope and pray your tests come back with a benign Dx. Danny Paige lpaige@...> wrote: Hi, I'm . This is all very new to me. I'm going through testing right now to get a diagnosis. My symptoms started with a weakness in my right hand, and then many months later, I started getting fasciculations and cramps in my lower left leg and foot. This quickly moved to my right leg, and now I have constant fasciculations and cramps in my legs (below the knees) and in my feet. They often keep me up at night. I had been basically ignoring the symptoms until I was in a car wreck and went to the Dr. for treatment of whiplash. He tested my reflexes and they were extremely hyper in the tendons. Since then, my reflexes have been tested twice more and they are repeatedly hyper. I saw my neurologist last week and he gave me three options for diagnosis. Hormones (I'm 43), MS or ALS. Needless to say I'm very scared. I had the evoked potential tests run yesterday, a complete physical and blood tests are scheduled for today, I have a nerve conduction velocity test tomorrow and a brain and cervical spine MRI on Thursday. Can someone share their experiences with me in terms of symptoms, and how long it took to get a diagnosis. I'm okay until I think about my kids (9 and 6), and then I lose it. If anyone can provide any hope encouragement or information that tells me that what I'm experience can't be ALS I would be grateful. To make this whole thing a bit ironic, I'm a research scientist who runs a neurodegeneration program for a biotech company. One of my Main projects is ALS. Check out the news link below. My grant for ALS research just got renewed.... http://www.alsa.org/news/article.cfm?id=815 Thanks, New Member - Hello Hello, My name is and my mother was recently diagnosed with PLS. You will see by my message below when I asked to subscribe, some of the details of her condition. I'm 38 and have been struggling along with her watching her go from dancing around the kitchen, to holding onto walls, to tripping out in the yard over nothing, to using a cane, then two canes, then finally a walker. I take her out occasionally and I push her in a wheel chair. She hates losing her independence and I hate that she has lost a lot of it. I do housework for her, shopping, doctor's appointments and phone calls. My brothers are of no help and one lives with her. Well, he does help a little, but I do the majority. At least he's there when she falls and I haven't had to speed to her house to pick her up as often as I used to. No one I know in my circle of friends has a parent who has anything near PLS. They may have heart conditions (which my mother also has) and cancer issues, but those, to me, are treatable and possibly reversible in some ways. PLS won't go away. My uncle (my mother's next oldest brother), died of ALS. I'm happy to know that my mother has the lesser end of it, but it's still very frustrating and sad. Thanks for letting me babble on. I'm glad we finally have a diagnosis and that perhaps I can chat with others and children of those who are inflicted with this awful condition. My husband doesn't understand it. He thinks his parents are immortal as far as I can tell. He sure is going to be disappointed when they're gone, isn't he. Again, thank you and I look forward to getting to know some, if not all of you. Have a safe day =============================================================== I would like to subscribe to your PLS Friends discussion group. My mother has PLS and was just diagnosed, finally, after 14 years of compounding symptoms. She is only 67. She has been through the gamut of tests and has seen doctor upon doctor. I guess this is it and this is what we have to deal with, what she has to live with. If she had been treated or diagnosed earlier, I wonder if she would be in better condition than she is now. I've looked at some of the photos of those on your site who have this rotten, disabling condition and everyone looks just as my mother does - completely normal. It isn't until she speaks or walks (using her walker) or has a throat spasm that you'd know anything is wrong with her. It's very sad. And as her only daughter, the caregiving falls to me. It's very stressful. That said, if there are any other children of parents with PLS, I would love to be in touch with them as well. Thank you. Sincerely, Dunn hed67@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2006 Report Share Posted January 13, 2006 Hi , I hope your testing turns out negative for MND. I too ignored symptoms for a couple of years as they were sporadic and inconsistent. I was Dx with ALS in 12/2000 with symptoms starting in early '97. I started the journey to Dx in September or October of 2000 and had a definitive Dx within 3 months. I saw a local neurologist who referred me to an ALS specialist who confirmed the dx. My symptoms are more closely related to PLS as my involvement is mainly upper motor neuron. I am still able to walk with a walker as my strength is fine, but spasticity and no balance is a big problem. The only lower motor neuron involvement was in my tongue. I'm 47 now and have 2 boys ages 14 and 11 so my kids were the same age as yours when I was Dx'd. I am also very hyperreflexive. Are you in the northeast? Make sure the neuro you see is familiar with MND. I'm sorry I couldn't be more assuring that it isn't ALS, but there is another yahoo group called " Living with ALS " where you can find a wonderful support group should you need to. I hope and pray your tests come back with a benign Dx. Danny Paige lpaige@...> wrote: Hi, I'm . This is all very new to me. I'm going through testing right now to get a diagnosis. My symptoms started with a weakness in my right hand, and then many months later, I started getting fasciculations and cramps in my lower left leg and foot. This quickly moved to my right leg, and now I have constant fasciculations and cramps in my legs (below the knees) and in my feet. They often keep me up at night. I had been basically ignoring the symptoms until I was in a car wreck and went to the Dr. for treatment of whiplash. He tested my reflexes and they were extremely hyper in the tendons. Since then, my reflexes have been tested twice more and they are repeatedly hyper. I saw my neurologist last week and he gave me three options for diagnosis. Hormones (I'm 43), MS or ALS. Needless to say I'm very scared. I had the evoked potential tests run yesterday, a complete physical and blood tests are scheduled for today, I have a nerve conduction velocity test tomorrow and a brain and cervical spine MRI on Thursday. Can someone share their experiences with me in terms of symptoms, and how long it took to get a diagnosis. I'm okay until I think about my kids (9 and 6), and then I lose it. If anyone can provide any hope encouragement or information that tells me that what I'm experience can't be ALS I would be grateful. To make this whole thing a bit ironic, I'm a research scientist who runs a neurodegeneration program for a biotech company. One of my Main projects is ALS. Check out the news link below. My grant for ALS research just got renewed.... http://www.alsa.org/news/article.cfm?id=815 Thanks, New Member - Hello Hello, My name is and my mother was recently diagnosed with PLS. You will see by my message below when I asked to subscribe, some of the details of her condition. I'm 38 and have been struggling along with her watching her go from dancing around the kitchen, to holding onto walls, to tripping out in the yard over nothing, to using a cane, then two canes, then finally a walker. I take her out occasionally and I push her in a wheel chair. She hates losing her independence and I hate that she has lost a lot of it. I do housework for her, shopping, doctor's appointments and phone calls. My brothers are of no help and one lives with her. Well, he does help a little, but I do the majority. At least he's there when she falls and I haven't had to speed to her house to pick her up as often as I used to. No one I know in my circle of friends has a parent who has anything near PLS. They may have heart conditions (which my mother also has) and cancer issues, but those, to me, are treatable and possibly reversible in some ways. PLS won't go away. My uncle (my mother's next oldest brother), died of ALS. I'm happy to know that my mother has the lesser end of it, but it's still very frustrating and sad. Thanks for letting me babble on. I'm glad we finally have a diagnosis and that perhaps I can chat with others and children of those who are inflicted with this awful condition. My husband doesn't understand it. He thinks his parents are immortal as far as I can tell. He sure is going to be disappointed when they're gone, isn't he. Again, thank you and I look forward to getting to know some, if not all of you. Have a safe day =============================================================== I would like to subscribe to your PLS Friends discussion group. My mother has PLS and was just diagnosed, finally, after 14 years of compounding symptoms. She is only 67. She has been through the gamut of tests and has seen doctor upon doctor. I guess this is it and this is what we have to deal with, what she has to live with. If she had been treated or diagnosed earlier, I wonder if she would be in better condition than she is now. I've looked at some of the photos of those on your site who have this rotten, disabling condition and everyone looks just as my mother does - completely normal. It isn't until she speaks or walks (using her walker) or has a throat spasm that you'd know anything is wrong with her. It's very sad. And as her only daughter, the caregiving falls to me. It's very stressful. That said, if there are any other children of parents with PLS, I would love to be in touch with them as well. Thank you. Sincerely, Dunn hed67@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2006 Report Share Posted January 14, 2006 Hi , I am 48 and have PLS. My room mate and 2 teenage daughters have had to go through what you are going through. i am glad you posted...as i need some more insight into what it is like to 'watch' a loved one go throught this. Some might disagree with me....but i think it may be harder on family and friends than on the sufferer.I KNOW what I am feeling and my ability to cope, mentally, improves with experience and encouragement'. But those who love me must feel so powerless and frustrated. Know that your mother probably has a lot of non- physical 'strength.....likely more than you could possibly know. We seem to get that stength from 'somewhere' and believe me, it helps. The part your mother MAY need the most help with (although everyone is different) is the process of grieving the losses associated with this illness. Loss of a degree of independence, loss of health and body 'image etc etc. For me...sometimes I just need to be 'heard'...then I pick up again. Be sure you have lots of help if you need it so you don't get worn out heather. You sound like a caring daughter. be sure that your needs are being looked after too! Take good care! ....PLS.....Alberta, Canada In PLS-FRIENDS , " hed920 " wrote: > > Hello, > > My name is and my mother was recently diagnosed with PLS. > You will see by my message below when I asked to subscribe, some of > the details of her condition. I'm 38 and have been struggling along > with her watching her go from dancing around the kitchen, to holding > onto walls, to tripping out in the yard over nothing, to using a > cane, then two canes, then finally a walker. I take her out > occasionally and I push her in a wheel chair. She hates losing her > independence and I hate that she has lost a lot of it. I do > housework for her, shopping, doctor's appointments and phone calls. > My brothers are of no help and one lives with her. Well, he does > help a little, but I do the majority. At least he's there when she > falls and I haven't had to speed to her house to pick her up as > often as I used to. No one I know in my circle of friends has a > parent who has anything near PLS. They may have heart conditions > (which my mother also has) and cancer issues, but those, to me, are > treatable and possibly reversible in some ways. PLS won't go away. > My uncle (my mother's next oldest brother), died of ALS. I'm happy > to know that my mother has the lesser end of it, but it's still very > frustrating and sad. > > Thanks for letting me babble on. I'm glad we finally have a > diagnosis and that perhaps I can chat with others and children of > those who are inflicted with this awful condition. My husband > doesn't understand it. He thinks his parents are immortal as far as > I can tell. He sure is going to be disappointed when they're gone, > isn't he. > > Again, thank you and I look forward to getting to know some, if not > all of you. > > Have a safe day > > > =============================================================== > > I would like to subscribe to your PLS Friends discussion group. My > mother has PLS and was just diagnosed, finally, after 14 years of > compounding symptoms. She is only 67. She has been through the > gamut of tests and has seen doctor upon doctor. I guess this is it > and this is what we have to deal with, what she has to live with. > If she had been treated or diagnosed earlier, I wonder if she would > be in better condition than she is now. I've looked at some of the > photos of those on your site who have this rotten, disabling > condition and everyone looks just as my mother does - completely > normal. It isn't until she speaks or walks (using her walker) or > has a throat spasm that you'd know anything is wrong with her. It's > very sad. And as her only daughter, the caregiving falls to me. > It's very stressful. That said, if there are any other children of > parents with PLS, I would love to be in touch with them as well. > > Thank you. > > Sincerely, > Dunn > hed67@c... > Quote Link to comment Share on other sites More sharing options...
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