Guest guest Posted October 13, 2004 Report Share Posted October 13, 2004 What I remember most is what a spunky lady you are! That came through loud and clear. Barbara > > Barbara, I remember my phone conversation with you. I think you were > the first person I spoke to about this disorder. One of the things I > most remember was your upbeat atitude despite deaking with your own > illness and your son's Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2005 Report Share Posted April 11, 2005 Yes, the real me! Doing better today. I hope it holds. B _____ From: Sent: Monday, April 11, 2005 6:03 PM To: Subject: Barbara Hey, is this really you Barbara? How are you feeling? Barbara Seaman wrote: >FYI > >http://www.neuro.wustl.edu/neuromuscular/mother/myotox.htm >Toxic myopathies > >http://www.spiralnotebook.org/justsayno/index.html >Lists of drugs reported to trigger muscle breakdown. (Scroll down) > > >Cohen et al on surgery/drugs as mito trigger: >As a general rule, patients with mitochondrial cytopathies are at greater risk than unaffected people for side effects of some medications. Although some medications may interfere with energy metabolism to some degree, complications are usually related to the clinical condition of the patient prior to surgery. . > >The adverse events [following surgery] reported include new neurologic problems such a strokes, worsening of the overall neurologic status, respiratory difficulties, seizures, cardiac arrhythmias, prolonged coma and death. . > >2) is a powerful oxidant with many useful purposes in our bodies, some of which seem quite unrelated, such as forming new memories and killing bacteria.OThe risk of respiratory failure and worsening of neurologic function is often noted in patients with mitochondrial cytopathies after " stressful " illnesses, including infections such as viral or pneumonia. Infections may be associated with surgical procedures, either as a complication of surgery or as the need for surgery, as in the case of a ruptured appendix. Infections, such as the common cold, can also occur randomly around the time of surgery. Certainly surgery itself, even if for a non-emergency condition, is a major stress. The following discussion is quite complicated but necessary in order to understand that anesthetic drugs alone should not be considered the only element in leading to these adverse outcomes. During infections, the body responds by making chemicals known as cytokines. Cytokines help the body fight infection, and are also responsible for the fever, aches, chills and the overall " rotten " feeling we get when we are ill. Cytokines induce the formation of nitric oxide. Nitric oxide (the chemical formula is N in high amounts may decrease energy production, which is ill-afforded in patients who already have an impaired ability to generate energy. Nitric oxide can also interact with other chemicals in the body that result in damage to the mitochondrial DNA and mitochondrial structure itself. One cytokine known as tumor necrosis factor (TNF), is known to be released by the body during surgery, and is also known to be a potent inhibitor of complex III. TNF has many essential functions, and serves as a natural defense against infections and cancer. In otherwise healthy people, the inhibitory effect on complex III is obviously not harmful, but may play some role in people with mitochondrial diseases, who are not able to tolerate any small decrement in mitochondrial function. Therefore, anesthetic agents may not be responsible, at least without additional factors, for causing neurologic deterioration. Both the stress of surgery as well as any associated infections may trigger the events leading to a deterioration in susceptible patients. (Anesthesiology 1997;87:420-5) 2OHowever, nitric oxide inhibits cis-acotinase (a citric acid cycle enzyme) and the iron-containing cytochromes of the respiratory chain. Therefore, N > > > > > > > >> Re: Mito Trigger? >> >> >>HI, Heidi and everyone, >> >>I am glad you are on your way to getting a diagnosis and starting the >>mito cocktail. I am particularly interested in the theory about the >>origin of your sudden terrible muscle problems. You said it was the >>metformin that could have triggered a drug reaction. I am curious - >>how did you come to that conclusion? If a doc suggested it, did he say >>if there were other drugs that are known to trigger mito? The reason >>that I ask is that I have always felt that something triggered my >>condtion to get a lot worse, at the time of my spinal surgery. I am >>not sure what it was, because I was on so many meds at the time. >> >>Have others here had the experience of sudden triggers unmasking the >>mito, or making the symptoms a lot worse suddenly? I strongly feel >>that might be the case with some of us. Then of course, the >>intriguing question is, what were the triggers? >> >>Regards >> >>Sunny >> >> >> >> >> >> >> >> >> >>> So, last week I received a clinical dx of mito from both neuro and >>> metabolics. So I guess I'm in the right place. Neuro said that I >>> don't have MS and my brain MRI shows no evidence of stroke so the >>> episodes could have been SLE's. Bloodwork and exam show muscle >>> disease. Carnitine deficiency plus other body systems and funky labs >>> plus family hx give enough weight to a clinical dx. Labs for DNA and >>> other funky things were drawn Monday so we'll see what comes out of >>> it. I may go down to Atlanta for a muscle bx if we don't find it in >>> blood. Not sure if it's dominant or maternally inherited because ther >>> are shockingly few boys in the family. Several stillbirths and >>> miscarriages that were boys though. Go figure. >>> >>> The theory about the sudden terrible muscle problems is this: I've >>>had >>> this underlying myopathy all my life, since you can't change your >>> genes. I've compensated well most of the time but the drug reaction >>>to >>> metformin (which happens in people with mito, go figure) destroyed >>> healthy muscle and left me with more abnormal, affected muscle trying >>> to do the job. So now I need to find out how to condition this lousy >>> muscle and get on with life. I have PT and OT evals next week. I'll >>> have a hearing test, a neuro-ophthalmology exam, and a sleep study. >>>It >>> will make for some busy weeks but we'll get more info. I really need >>> to figure out if this will be a short-term thing or if I should try to >>> modify my work (although right now I can't write so I can't work at >>> all). >>> >>> The diabetes is under control with insulin 4 times a day and blood >>> sugar checks 4-7 times a day. Still waiting for the blood work to see >>> if it's type 1 or2. >>> >>> Heidi >>> >>> So now I have an appt with Dr. Sims at MGH. I've heard conflicting >>> reviews but hopefully it won't be a waste of time. >>> >>> >>> >>> >>> >>>Medical advice, information, opinions, data and statements contained >>>herein are not necessarily those of the list moderators. The author of >>>this e mail is entirely responsible for its content. List members are >>>reminded of their responsibility to evaluate the content of the >>>postings and consult with their physicians regarding changes in their >>>own treatment. >>> >>> Personal attacks are not permitted on the list and anyone who sends >>>one is automatically moderated or removed depending on the severity of >>>the attack. >>> >>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2005 Report Share Posted April 11, 2005 Yes, the real me! Doing better today. I hope it holds. B _____ From: Sent: Monday, April 11, 2005 6:03 PM To: Subject: Barbara Hey, is this really you Barbara? How are you feeling? Barbara Seaman wrote: >FYI > >http://www.neuro.wustl.edu/neuromuscular/mother/myotox.htm >Toxic myopathies > >http://www.spiralnotebook.org/justsayno/index.html >Lists of drugs reported to trigger muscle breakdown. (Scroll down) > > >Cohen et al on surgery/drugs as mito trigger: >As a general rule, patients with mitochondrial cytopathies are at greater risk than unaffected people for side effects of some medications. Although some medications may interfere with energy metabolism to some degree, complications are usually related to the clinical condition of the patient prior to surgery. . > >The adverse events [following surgery] reported include new neurologic problems such a strokes, worsening of the overall neurologic status, respiratory difficulties, seizures, cardiac arrhythmias, prolonged coma and death. . > >2) is a powerful oxidant with many useful purposes in our bodies, some of which seem quite unrelated, such as forming new memories and killing bacteria.OThe risk of respiratory failure and worsening of neurologic function is often noted in patients with mitochondrial cytopathies after " stressful " illnesses, including infections such as viral or pneumonia. Infections may be associated with surgical procedures, either as a complication of surgery or as the need for surgery, as in the case of a ruptured appendix. Infections, such as the common cold, can also occur randomly around the time of surgery. Certainly surgery itself, even if for a non-emergency condition, is a major stress. The following discussion is quite complicated but necessary in order to understand that anesthetic drugs alone should not be considered the only element in leading to these adverse outcomes. During infections, the body responds by making chemicals known as cytokines. Cytokines help the body fight infection, and are also responsible for the fever, aches, chills and the overall " rotten " feeling we get when we are ill. Cytokines induce the formation of nitric oxide. Nitric oxide (the chemical formula is N in high amounts may decrease energy production, which is ill-afforded in patients who already have an impaired ability to generate energy. Nitric oxide can also interact with other chemicals in the body that result in damage to the mitochondrial DNA and mitochondrial structure itself. One cytokine known as tumor necrosis factor (TNF), is known to be released by the body during surgery, and is also known to be a potent inhibitor of complex III. TNF has many essential functions, and serves as a natural defense against infections and cancer. In otherwise healthy people, the inhibitory effect on complex III is obviously not harmful, but may play some role in people with mitochondrial diseases, who are not able to tolerate any small decrement in mitochondrial function. Therefore, anesthetic agents may not be responsible, at least without additional factors, for causing neurologic deterioration. Both the stress of surgery as well as any associated infections may trigger the events leading to a deterioration in susceptible patients. (Anesthesiology 1997;87:420-5) 2OHowever, nitric oxide inhibits cis-acotinase (a citric acid cycle enzyme) and the iron-containing cytochromes of the respiratory chain. Therefore, N > > > > > > > >> Re: Mito Trigger? >> >> >>HI, Heidi and everyone, >> >>I am glad you are on your way to getting a diagnosis and starting the >>mito cocktail. I am particularly interested in the theory about the >>origin of your sudden terrible muscle problems. You said it was the >>metformin that could have triggered a drug reaction. I am curious - >>how did you come to that conclusion? If a doc suggested it, did he say >>if there were other drugs that are known to trigger mito? The reason >>that I ask is that I have always felt that something triggered my >>condtion to get a lot worse, at the time of my spinal surgery. I am >>not sure what it was, because I was on so many meds at the time. >> >>Have others here had the experience of sudden triggers unmasking the >>mito, or making the symptoms a lot worse suddenly? I strongly feel >>that might be the case with some of us. Then of course, the >>intriguing question is, what were the triggers? >> >>Regards >> >>Sunny >> >> >> >> >> >> >> >> >> >>> So, last week I received a clinical dx of mito from both neuro and >>> metabolics. So I guess I'm in the right place. Neuro said that I >>> don't have MS and my brain MRI shows no evidence of stroke so the >>> episodes could have been SLE's. Bloodwork and exam show muscle >>> disease. Carnitine deficiency plus other body systems and funky labs >>> plus family hx give enough weight to a clinical dx. Labs for DNA and >>> other funky things were drawn Monday so we'll see what comes out of >>> it. I may go down to Atlanta for a muscle bx if we don't find it in >>> blood. Not sure if it's dominant or maternally inherited because ther >>> are shockingly few boys in the family. Several stillbirths and >>> miscarriages that were boys though. Go figure. >>> >>> The theory about the sudden terrible muscle problems is this: I've >>>had >>> this underlying myopathy all my life, since you can't change your >>> genes. I've compensated well most of the time but the drug reaction >>>to >>> metformin (which happens in people with mito, go figure) destroyed >>> healthy muscle and left me with more abnormal, affected muscle trying >>> to do the job. So now I need to find out how to condition this lousy >>> muscle and get on with life. I have PT and OT evals next week. I'll >>> have a hearing test, a neuro-ophthalmology exam, and a sleep study. >>>It >>> will make for some busy weeks but we'll get more info. I really need >>> to figure out if this will be a short-term thing or if I should try to >>> modify my work (although right now I can't write so I can't work at >>> all). >>> >>> The diabetes is under control with insulin 4 times a day and blood >>> sugar checks 4-7 times a day. Still waiting for the blood work to see >>> if it's type 1 or2. >>> >>> Heidi >>> >>> So now I have an appt with Dr. Sims at MGH. I've heard conflicting >>> reviews but hopefully it won't be a waste of time. >>> >>> >>> >>> >>> >>>Medical advice, information, opinions, data and statements contained >>>herein are not necessarily those of the list moderators. The author of >>>this e mail is entirely responsible for its content. List members are >>>reminded of their responsibility to evaluate the content of the >>>postings and consult with their physicians regarding changes in their >>>own treatment. >>> >>> Personal attacks are not permitted on the list and anyone who sends >>>one is automatically moderated or removed depending on the severity of >>>the attack. >>> >>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2005 Report Share Posted April 11, 2005 Pleasssee take it easy lady!!!! It is wonderful that you are feeling up to posting, but we would rather have you lay low than have a relapse. Hugs, Barbara Seaman wrote: >Yes, the real me! Doing better today. I hope it holds. > > > >B > > > > _____ > >From: >Sent: Monday, April 11, 2005 6:03 PM >To: >Subject: Barbara > > > >Hey, is this really you Barbara? How are you feeling? > > > >Barbara Seaman wrote: > > > >>FYI >> >>http://www.neuro.wustl.edu/neuromuscular/mother/myotox.htm >>Toxic myopathies >> >>http://www.spiralnotebook.org/justsayno/index.html >>Lists of drugs reported to trigger muscle breakdown. (Scroll down) >> >> >>Cohen et al on surgery/drugs as mito trigger: >>As a general rule, patients with mitochondrial cytopathies are at greater >> >> >risk than unaffected people for side effects of some medications. Although >some medications may interfere with energy metabolism to some degree, >complications are usually related to the clinical condition of the patient >prior to surgery. . > > >>The adverse events [following surgery] reported include new neurologic >> >> >problems such a strokes, worsening of the overall neurologic status, >respiratory difficulties, seizures, cardiac arrhythmias, prolonged coma and >death. . > > >>2) is a powerful oxidant with many useful purposes in our bodies, some of >> >> >which seem quite unrelated, such as forming new memories and killing >bacteria.OThe risk of respiratory failure and worsening of neurologic >function is often noted in patients with mitochondrial cytopathies after > " stressful " illnesses, including infections such as viral or pneumonia. >Infections may be associated with surgical procedures, either as a >complication of surgery or as the need for surgery, as in the case of a >ruptured appendix. Infections, such as the common cold, can also occur >randomly around the time of surgery. Certainly surgery itself, even if for a >non-emergency condition, is a major stress. The following discussion is >quite complicated but necessary in order to understand that anesthetic drugs >alone should not be considered the only element in leading to these adverse >outcomes. During infections, the body responds by making chemicals known as >cytokines. Cytokines help the body fight infection, and are also responsible >for the fever, aches, chills and the overall " rotten " feeling we get when we >are ill. Cytokines induce the formation of nitric oxide. Nitric oxide (the >chemical formula is N in high amounts may decrease energy production, which >is ill-afforded in patients who already have an impaired ability to generate >energy. Nitric oxide can also interact with other chemicals in the body that >result in damage to the mitochondrial DNA and mitochondrial structure >itself. One cytokine known as tumor necrosis factor (TNF), is known to be >released by the body during surgery, and is also known to be a potent >inhibitor of complex III. TNF has many essential functions, and serves as a >natural defense against infections and cancer. In otherwise healthy people, >the inhibitory effect on complex III is obviously not harmful, but may play >some role in people with mitochondrial diseases, who are not able to >tolerate any small decrement in mitochondrial function. Therefore, >anesthetic agents may not be responsible, at least without additional >factors, for causing neurologic deterioration. Both the stress of surgery as >well as any associated infections may trigger the events leading to a >deterioration in susceptible patients. (Anesthesiology 1997;87:420-5) >2OHowever, nitric oxide inhibits cis-acotinase (a citric acid cycle enzyme) >and the iron-containing cytochromes of the respiratory chain. Therefore, N > > >> >> >> >> >> >> >> >>> Re: Mito Trigger? >>> >>> >>>HI, Heidi and everyone, >>> >>>I am glad you are on your way to getting a diagnosis and starting the >>>mito cocktail. I am particularly interested in the theory about the >>>origin of your sudden terrible muscle problems. You said it was the >>>metformin that could have triggered a drug reaction. I am curious - >>>how did you come to that conclusion? If a doc suggested it, did he say >>>if there were other drugs that are known to trigger mito? The reason >>>that I ask is that I have always felt that something triggered my >>>condtion to get a lot worse, at the time of my spinal surgery. I am >>>not sure what it was, because I was on so many meds at the time. >>> >>>Have others here had the experience of sudden triggers unmasking the >>>mito, or making the symptoms a lot worse suddenly? I strongly feel >>>that might be the case with some of us. Then of course, the >>>intriguing question is, what were the triggers? >>> >>>Regards >>> >>>Sunny >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>>>So, last week I received a clinical dx of mito from both neuro and >>>>metabolics. So I guess I'm in the right place. Neuro said that I >>>>don't have MS and my brain MRI shows no evidence of stroke so the >>>>episodes could have been SLE's. Bloodwork and exam show muscle >>>>disease. Carnitine deficiency plus other body systems and funky labs >>>>plus family hx give enough weight to a clinical dx. Labs for DNA and >>>>other funky things were drawn Monday so we'll see what comes out of >>>>it. I may go down to Atlanta for a muscle bx if we don't find it in >>>>blood. Not sure if it's dominant or maternally inherited because ther >>>>are shockingly few boys in the family. Several stillbirths and >>>>miscarriages that were boys though. Go figure. >>>> >>>>The theory about the sudden terrible muscle problems is this: I've >>>>had >>>>this underlying myopathy all my life, since you can't change your >>>>genes. I've compensated well most of the time but the drug reaction >>>>to >>>>metformin (which happens in people with mito, go figure) destroyed >>>>healthy muscle and left me with more abnormal, affected muscle trying >>>>to do the job. So now I need to find out how to condition this lousy >>>>muscle and get on with life. I have PT and OT evals next week. I'll >>>>have a hearing test, a neuro-ophthalmology exam, and a sleep study. >>>>It >>>>will make for some busy weeks but we'll get more info. I really need >>>>to figure out if this will be a short-term thing or if I should try to >>>>modify my work (although right now I can't write so I can't work at >>>>all). >>>> >>>>The diabetes is under control with insulin 4 times a day and blood >>>>sugar checks 4-7 times a day. Still waiting for the blood work to see >>>>if it's type 1 or2. >>>> >>>>Heidi >>>> >>>>So now I have an appt with Dr. Sims at MGH. I've heard conflicting >>>>reviews but hopefully it won't be a waste of time. >>>> >>>> >>>> >>>> >>>> >>>>Medical advice, information, opinions, data and statements contained >>>>herein are not necessarily those of the list moderators. The author of >>>>this e mail is entirely responsible for its content. List members are >>>>reminded of their responsibility to evaluate the content of the >>>>postings and consult with their physicians regarding changes in their >>>>own treatment. >>>> >>>>Personal attacks are not permitted on the list and anyone who sends >>>>one is automatically moderated or removed depending on the severity of >>>>the attack. >>>> >>>> >>>> >>>> >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2005 Report Share Posted April 11, 2005 Pleasssee take it easy lady!!!! It is wonderful that you are feeling up to posting, but we would rather have you lay low than have a relapse. Hugs, Barbara Seaman wrote: >Yes, the real me! Doing better today. I hope it holds. > > > >B > > > > _____ > >From: >Sent: Monday, April 11, 2005 6:03 PM >To: >Subject: Barbara > > > >Hey, is this really you Barbara? How are you feeling? > > > >Barbara Seaman wrote: > > > >>FYI >> >>http://www.neuro.wustl.edu/neuromuscular/mother/myotox.htm >>Toxic myopathies >> >>http://www.spiralnotebook.org/justsayno/index.html >>Lists of drugs reported to trigger muscle breakdown. (Scroll down) >> >> >>Cohen et al on surgery/drugs as mito trigger: >>As a general rule, patients with mitochondrial cytopathies are at greater >> >> >risk than unaffected people for side effects of some medications. Although >some medications may interfere with energy metabolism to some degree, >complications are usually related to the clinical condition of the patient >prior to surgery. . > > >>The adverse events [following surgery] reported include new neurologic >> >> >problems such a strokes, worsening of the overall neurologic status, >respiratory difficulties, seizures, cardiac arrhythmias, prolonged coma and >death. . > > >>2) is a powerful oxidant with many useful purposes in our bodies, some of >> >> >which seem quite unrelated, such as forming new memories and killing >bacteria.OThe risk of respiratory failure and worsening of neurologic >function is often noted in patients with mitochondrial cytopathies after > " stressful " illnesses, including infections such as viral or pneumonia. >Infections may be associated with surgical procedures, either as a >complication of surgery or as the need for surgery, as in the case of a >ruptured appendix. Infections, such as the common cold, can also occur >randomly around the time of surgery. Certainly surgery itself, even if for a >non-emergency condition, is a major stress. The following discussion is >quite complicated but necessary in order to understand that anesthetic drugs >alone should not be considered the only element in leading to these adverse >outcomes. During infections, the body responds by making chemicals known as >cytokines. Cytokines help the body fight infection, and are also responsible >for the fever, aches, chills and the overall " rotten " feeling we get when we >are ill. Cytokines induce the formation of nitric oxide. Nitric oxide (the >chemical formula is N in high amounts may decrease energy production, which >is ill-afforded in patients who already have an impaired ability to generate >energy. Nitric oxide can also interact with other chemicals in the body that >result in damage to the mitochondrial DNA and mitochondrial structure >itself. One cytokine known as tumor necrosis factor (TNF), is known to be >released by the body during surgery, and is also known to be a potent >inhibitor of complex III. TNF has many essential functions, and serves as a >natural defense against infections and cancer. In otherwise healthy people, >the inhibitory effect on complex III is obviously not harmful, but may play >some role in people with mitochondrial diseases, who are not able to >tolerate any small decrement in mitochondrial function. Therefore, >anesthetic agents may not be responsible, at least without additional >factors, for causing neurologic deterioration. Both the stress of surgery as >well as any associated infections may trigger the events leading to a >deterioration in susceptible patients. (Anesthesiology 1997;87:420-5) >2OHowever, nitric oxide inhibits cis-acotinase (a citric acid cycle enzyme) >and the iron-containing cytochromes of the respiratory chain. Therefore, N > > >> >> >> >> >> >> >> >>> Re: Mito Trigger? >>> >>> >>>HI, Heidi and everyone, >>> >>>I am glad you are on your way to getting a diagnosis and starting the >>>mito cocktail. I am particularly interested in the theory about the >>>origin of your sudden terrible muscle problems. You said it was the >>>metformin that could have triggered a drug reaction. I am curious - >>>how did you come to that conclusion? If a doc suggested it, did he say >>>if there were other drugs that are known to trigger mito? The reason >>>that I ask is that I have always felt that something triggered my >>>condtion to get a lot worse, at the time of my spinal surgery. I am >>>not sure what it was, because I was on so many meds at the time. >>> >>>Have others here had the experience of sudden triggers unmasking the >>>mito, or making the symptoms a lot worse suddenly? I strongly feel >>>that might be the case with some of us. Then of course, the >>>intriguing question is, what were the triggers? >>> >>>Regards >>> >>>Sunny >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>>>So, last week I received a clinical dx of mito from both neuro and >>>>metabolics. So I guess I'm in the right place. Neuro said that I >>>>don't have MS and my brain MRI shows no evidence of stroke so the >>>>episodes could have been SLE's. Bloodwork and exam show muscle >>>>disease. Carnitine deficiency plus other body systems and funky labs >>>>plus family hx give enough weight to a clinical dx. Labs for DNA and >>>>other funky things were drawn Monday so we'll see what comes out of >>>>it. I may go down to Atlanta for a muscle bx if we don't find it in >>>>blood. Not sure if it's dominant or maternally inherited because ther >>>>are shockingly few boys in the family. Several stillbirths and >>>>miscarriages that were boys though. Go figure. >>>> >>>>The theory about the sudden terrible muscle problems is this: I've >>>>had >>>>this underlying myopathy all my life, since you can't change your >>>>genes. I've compensated well most of the time but the drug reaction >>>>to >>>>metformin (which happens in people with mito, go figure) destroyed >>>>healthy muscle and left me with more abnormal, affected muscle trying >>>>to do the job. So now I need to find out how to condition this lousy >>>>muscle and get on with life. I have PT and OT evals next week. I'll >>>>have a hearing test, a neuro-ophthalmology exam, and a sleep study. >>>>It >>>>will make for some busy weeks but we'll get more info. I really need >>>>to figure out if this will be a short-term thing or if I should try to >>>>modify my work (although right now I can't write so I can't work at >>>>all). >>>> >>>>The diabetes is under control with insulin 4 times a day and blood >>>>sugar checks 4-7 times a day. Still waiting for the blood work to see >>>>if it's type 1 or2. >>>> >>>>Heidi >>>> >>>>So now I have an appt with Dr. Sims at MGH. I've heard conflicting >>>>reviews but hopefully it won't be a waste of time. >>>> >>>> >>>> >>>> >>>> >>>>Medical advice, information, opinions, data and statements contained >>>>herein are not necessarily those of the list moderators. The author of >>>>this e mail is entirely responsible for its content. List members are >>>>reminded of their responsibility to evaluate the content of the >>>>postings and consult with their physicians regarding changes in their >>>>own treatment. >>>> >>>>Personal attacks are not permitted on the list and anyone who sends >>>>one is automatically moderated or removed depending on the severity of >>>>the attack. >>>> >>>> >>>> >>>> >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2005 Report Share Posted April 11, 2005 Yes, glad to hear you are up and typing, but take it easy. On a note related to " laying low " , there was a conversation a while back about dictation software instead of typing. Could anybody point me to one or two programs they have found useful? My husband's cousin has MS, and has had some relaspses lately, and her hands are affected the worst. It would be great if we could get her some info on dictation software. Take care, RH > >>> > >>> > >>> > >>> > >>> > >>>>So, last week I received a clinical dx of mito from both neuro and > >>>>metabolics. So I guess I'm in the right place. Neuro said that I > >>>>don't have MS and my brain MRI shows no evidence of stroke so the > >>>>episodes could have been SLE's. Bloodwork and exam show muscle > >>>>disease. Carnitine deficiency plus other body systems and funky labs > >>>>plus family hx give enough weight to a clinical dx. Labs for DNA and > >>>>other funky things were drawn Monday so we'll see what comes out of > >>>>it. I may go down to Atlanta for a muscle bx if we don't find it in > >>>>blood. Not sure if it's dominant or maternally inherited because ther > >>>>are shockingly few boys in the family. Several stillbirths and > >>>>miscarriages that were boys though. Go figure. > >>>> > >>>>The theory about the sudden terrible muscle problems is this: I've > >>>>had > >>>>this underlying myopathy all my life, since you can't change your > >>>>genes. I've compensated well most of the time but the drug reaction > >>>>to > >>>>metformin (which happens in people with mito, go figure) destroyed > >>>>healthy muscle and left me with more abnormal, affected muscle trying > >>>>to do the job. So now I need to find out how to condition this lousy > >>>>muscle and get on with life. I have PT and OT evals next week. I'll > >>>>have a hearing test, a neuro-ophthalmology exam, and a sleep study. > >>>>It > >>>>will make for some busy weeks but we'll get more info. I really need > >>>>to figure out if this will be a short-term thing or if I should try to > >>>>modify my work (although right now I can't write so I can't work at > >>>>all). > >>>> > >>>>The diabetes is under control with insulin 4 times a day and blood > >>>>sugar checks 4-7 times a day. Still waiting for the blood work to see > >>>>if it's type 1 or2. > >>>> > >>>>Heidi > >>>> > >>>>So now I have an appt with Dr. Sims at MGH. I've heard conflicting > >>>>reviews but hopefully it won't be a waste of time. > >>>> > >>>> > >>>> > >>>> > >>>> > >>>>Medical advice, information, opinions, data and statements contained > >>>>herein are not necessarily those of the list moderators. The author of > >>>>this e mail is entirely responsible for its content. List members are > >>>>reminded of their responsibility to evaluate the content of the > >>>>postings and consult with their physicians regarding changes in their > >>>>own treatment. > >>>> > >>>>Personal attacks are not permitted on the list and anyone who sends > >>>>one is automatically moderated or removed depending on the severity of > >>>>the attack. > >>>> > >>>> > >>>> > >>>> > >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2005 Report Share Posted April 11, 2005 Yes, glad to hear you are up and typing, but take it easy. On a note related to " laying low " , there was a conversation a while back about dictation software instead of typing. Could anybody point me to one or two programs they have found useful? My husband's cousin has MS, and has had some relaspses lately, and her hands are affected the worst. It would be great if we could get her some info on dictation software. Take care, RH > >>> > >>> > >>> > >>> > >>> > >>>>So, last week I received a clinical dx of mito from both neuro and > >>>>metabolics. So I guess I'm in the right place. Neuro said that I > >>>>don't have MS and my brain MRI shows no evidence of stroke so the > >>>>episodes could have been SLE's. Bloodwork and exam show muscle > >>>>disease. Carnitine deficiency plus other body systems and funky labs > >>>>plus family hx give enough weight to a clinical dx. Labs for DNA and > >>>>other funky things were drawn Monday so we'll see what comes out of > >>>>it. I may go down to Atlanta for a muscle bx if we don't find it in > >>>>blood. Not sure if it's dominant or maternally inherited because ther > >>>>are shockingly few boys in the family. Several stillbirths and > >>>>miscarriages that were boys though. Go figure. > >>>> > >>>>The theory about the sudden terrible muscle problems is this: I've > >>>>had > >>>>this underlying myopathy all my life, since you can't change your > >>>>genes. I've compensated well most of the time but the drug reaction > >>>>to > >>>>metformin (which happens in people with mito, go figure) destroyed > >>>>healthy muscle and left me with more abnormal, affected muscle trying > >>>>to do the job. So now I need to find out how to condition this lousy > >>>>muscle and get on with life. I have PT and OT evals next week. I'll > >>>>have a hearing test, a neuro-ophthalmology exam, and a sleep study. > >>>>It > >>>>will make for some busy weeks but we'll get more info. I really need > >>>>to figure out if this will be a short-term thing or if I should try to > >>>>modify my work (although right now I can't write so I can't work at > >>>>all). > >>>> > >>>>The diabetes is under control with insulin 4 times a day and blood > >>>>sugar checks 4-7 times a day. Still waiting for the blood work to see > >>>>if it's type 1 or2. > >>>> > >>>>Heidi > >>>> > >>>>So now I have an appt with Dr. Sims at MGH. I've heard conflicting > >>>>reviews but hopefully it won't be a waste of time. > >>>> > >>>> > >>>> > >>>> > >>>> > >>>>Medical advice, information, opinions, data and statements contained > >>>>herein are not necessarily those of the list moderators. The author of > >>>>this e mail is entirely responsible for its content. List members are > >>>>reminded of their responsibility to evaluate the content of the > >>>>postings and consult with their physicians regarding changes in their > >>>>own treatment. > >>>> > >>>>Personal attacks are not permitted on the list and anyone who sends > >>>>one is automatically moderated or removed depending on the severity of > >>>>the attack. > >>>> > >>>> > >>>> > >>>> > >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2005 Report Share Posted April 11, 2005 The best one is Dragon Naturally Speaking 8. I use the Professional version. It retails for $800 but we found it for $625. I like it very much. The Preferred Version retails for $200, but doesn't do everything I need. http://www.scansoft.com/naturallyspeaking/preferred/ http://www.scansoft.com/naturallyspeaking/professional/ B _____ From: ohgminion Sent: Monday, April 11, 2005 7:25 PM To: Subject: Re: Barbara Yes, glad to hear you are up and typing, but take it easy. On a note related to " laying low " , there was a conversation a while back about dictation software instead of typing. Could anybody point me to one or two programs they have found useful? My husband's cousin has MS, and has had some relaspses lately, and her hands are affected the worst. It would be great if we could get her some info on dictation software. Take care, RH > >>> > >>> > >>> > >>> > >>> > >>>>So, last week I received a clinical dx of mito from both neuro and > >>>>metabolics. So I guess I'm in the right place. Neuro said that I > >>>>don't have MS and my brain MRI shows no evidence of stroke so the > >>>>episodes could have been SLE's. Bloodwork and exam show muscle > >>>>disease. Carnitine deficiency plus other body systems and funky labs > >>>>plus family hx give enough weight to a clinical dx. Labs for DNA and > >>>>other funky things were drawn Monday so we'll see what comes out of > >>>>it. I may go down to Atlanta for a muscle bx if we don't find it in > >>>>blood. Not sure if it's dominant or maternally inherited because ther > >>>>are shockingly few boys in the family. Several stillbirths and > >>>>miscarriages that were boys though. Go figure. > >>>> > >>>>The theory about the sudden terrible muscle problems is this: I've > >>>>had > >>>>this underlying myopathy all my life, since you can't change your > >>>>genes. I've compensated well most of the time but the drug reaction > >>>>to > >>>>metformin (which happens in people with mito, go figure) destroyed > >>>>healthy muscle and left me with more abnormal, affected muscle trying > >>>>to do the job. So now I need to find out how to condition this lousy > >>>>muscle and get on with life. I have PT and OT evals next week. I'll > >>>>have a hearing test, a neuro-ophthalmology exam, and a sleep study. > >>>>It > >>>>will make for some busy weeks but we'll get more info. I really need > >>>>to figure out if this will be a short-term thing or if I should try to > >>>>modify my work (although right now I can't write so I can't work at > >>>>all). > >>>> > >>>>The diabetes is under control with insulin 4 times a day and blood > >>>>sugar checks 4-7 times a day. Still waiting for the blood work to see > >>>>if it's type 1 or2. > >>>> > >>>>Heidi > >>>> > >>>>So now I have an appt with Dr. Sims at MGH. I've heard conflicting > >>>>reviews but hopefully it won't be a waste of time. > >>>> > >>>> > >>>> > >>>> > >>>> > >>>>Medical advice, information, opinions, data and statements contained > >>>>herein are not necessarily those of the list moderators. The author of > >>>>this e mail is entirely responsible for its content. List members are > >>>>reminded of their responsibility to evaluate the content of the > >>>>postings and consult with their physicians regarding changes in their > >>>>own treatment. > >>>> > >>>>Personal attacks are not permitted on the list and anyone who sends > >>>>one is automatically moderated or removed depending on the severity of > >>>>the attack. > >>>> > >>>> > >>>> > >>>> > >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2005 Report Share Posted April 11, 2005 The best one is Dragon Naturally Speaking 8. I use the Professional version. It retails for $800 but we found it for $625. I like it very much. The Preferred Version retails for $200, but doesn't do everything I need. http://www.scansoft.com/naturallyspeaking/preferred/ http://www.scansoft.com/naturallyspeaking/professional/ B _____ From: ohgminion Sent: Monday, April 11, 2005 7:25 PM To: Subject: Re: Barbara Yes, glad to hear you are up and typing, but take it easy. On a note related to " laying low " , there was a conversation a while back about dictation software instead of typing. Could anybody point me to one or two programs they have found useful? My husband's cousin has MS, and has had some relaspses lately, and her hands are affected the worst. It would be great if we could get her some info on dictation software. Take care, RH > >>> > >>> > >>> > >>> > >>> > >>>>So, last week I received a clinical dx of mito from both neuro and > >>>>metabolics. So I guess I'm in the right place. Neuro said that I > >>>>don't have MS and my brain MRI shows no evidence of stroke so the > >>>>episodes could have been SLE's. Bloodwork and exam show muscle > >>>>disease. Carnitine deficiency plus other body systems and funky labs > >>>>plus family hx give enough weight to a clinical dx. Labs for DNA and > >>>>other funky things were drawn Monday so we'll see what comes out of > >>>>it. I may go down to Atlanta for a muscle bx if we don't find it in > >>>>blood. Not sure if it's dominant or maternally inherited because ther > >>>>are shockingly few boys in the family. Several stillbirths and > >>>>miscarriages that were boys though. Go figure. > >>>> > >>>>The theory about the sudden terrible muscle problems is this: I've > >>>>had > >>>>this underlying myopathy all my life, since you can't change your > >>>>genes. I've compensated well most of the time but the drug reaction > >>>>to > >>>>metformin (which happens in people with mito, go figure) destroyed > >>>>healthy muscle and left me with more abnormal, affected muscle trying > >>>>to do the job. So now I need to find out how to condition this lousy > >>>>muscle and get on with life. I have PT and OT evals next week. I'll > >>>>have a hearing test, a neuro-ophthalmology exam, and a sleep study. > >>>>It > >>>>will make for some busy weeks but we'll get more info. I really need > >>>>to figure out if this will be a short-term thing or if I should try to > >>>>modify my work (although right now I can't write so I can't work at > >>>>all). > >>>> > >>>>The diabetes is under control with insulin 4 times a day and blood > >>>>sugar checks 4-7 times a day. Still waiting for the blood work to see > >>>>if it's type 1 or2. > >>>> > >>>>Heidi > >>>> > >>>>So now I have an appt with Dr. Sims at MGH. I've heard conflicting > >>>>reviews but hopefully it won't be a waste of time. > >>>> > >>>> > >>>> > >>>> > >>>> > >>>>Medical advice, information, opinions, data and statements contained > >>>>herein are not necessarily those of the list moderators. The author of > >>>>this e mail is entirely responsible for its content. List members are > >>>>reminded of their responsibility to evaluate the content of the > >>>>postings and consult with their physicians regarding changes in their > >>>>own treatment. > >>>> > >>>>Personal attacks are not permitted on the list and anyone who sends > >>>>one is automatically moderated or removed depending on the severity of > >>>>the attack. > >>>> > >>>> > >>>> > >>>> > >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2005 Report Share Posted April 11, 2005 The best one is Dragon Naturally Speaking 8. I use the Professional version. It retails for $800 but we found it for $625. I like it very much. The Preferred Version retails for $200, but doesn't do everything I need. http://www.scansoft.com/naturallyspeaking/preferred/ http://www.scansoft.com/naturallyspeaking/professional/ B _____ From: ohgminion Sent: Monday, April 11, 2005 7:25 PM To: Subject: Re: Barbara Yes, glad to hear you are up and typing, but take it easy. On a note related to " laying low " , there was a conversation a while back about dictation software instead of typing. Could anybody point me to one or two programs they have found useful? My husband's cousin has MS, and has had some relaspses lately, and her hands are affected the worst. It would be great if we could get her some info on dictation software. Take care, RH > >>> > >>> > >>> > >>> > >>> > >>>>So, last week I received a clinical dx of mito from both neuro and > >>>>metabolics. So I guess I'm in the right place. Neuro said that I > >>>>don't have MS and my brain MRI shows no evidence of stroke so the > >>>>episodes could have been SLE's. Bloodwork and exam show muscle > >>>>disease. Carnitine deficiency plus other body systems and funky labs > >>>>plus family hx give enough weight to a clinical dx. Labs for DNA and > >>>>other funky things were drawn Monday so we'll see what comes out of > >>>>it. I may go down to Atlanta for a muscle bx if we don't find it in > >>>>blood. Not sure if it's dominant or maternally inherited because ther > >>>>are shockingly few boys in the family. Several stillbirths and > >>>>miscarriages that were boys though. Go figure. > >>>> > >>>>The theory about the sudden terrible muscle problems is this: I've > >>>>had > >>>>this underlying myopathy all my life, since you can't change your > >>>>genes. I've compensated well most of the time but the drug reaction > >>>>to > >>>>metformin (which happens in people with mito, go figure) destroyed > >>>>healthy muscle and left me with more abnormal, affected muscle trying > >>>>to do the job. So now I need to find out how to condition this lousy > >>>>muscle and get on with life. I have PT and OT evals next week. I'll > >>>>have a hearing test, a neuro-ophthalmology exam, and a sleep study. > >>>>It > >>>>will make for some busy weeks but we'll get more info. I really need > >>>>to figure out if this will be a short-term thing or if I should try to > >>>>modify my work (although right now I can't write so I can't work at > >>>>all). > >>>> > >>>>The diabetes is under control with insulin 4 times a day and blood > >>>>sugar checks 4-7 times a day. Still waiting for the blood work to see > >>>>if it's type 1 or2. > >>>> > >>>>Heidi > >>>> > >>>>So now I have an appt with Dr. Sims at MGH. I've heard conflicting > >>>>reviews but hopefully it won't be a waste of time. > >>>> > >>>> > >>>> > >>>> > >>>> > >>>>Medical advice, information, opinions, data and statements contained > >>>>herein are not necessarily those of the list moderators. The author of > >>>>this e mail is entirely responsible for its content. List members are > >>>>reminded of their responsibility to evaluate the content of the > >>>>postings and consult with their physicians regarding changes in their > >>>>own treatment. > >>>> > >>>>Personal attacks are not permitted on the list and anyone who sends > >>>>one is automatically moderated or removed depending on the severity of > >>>>the attack. > >>>> > >>>> > >>>> > >>>> > >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 Hi Barbara, I feel so a miss in not checking about you sooner. Please forgive me. How are YOU? How did the gamma knife procedure go? I was thinking of you when I was in Cleveland. I hope all went well. Please update me when you can. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 Barbara, Wonderful to hear that you are doing better now. Praying you continue to improve and gain strength. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 , Bless your heart, absolutely no apologies necessary after what all you have been through. I am MUCH better, happy to report. Not back to baseline pre Gamma Knife, but getting there. We put the walker back in the closet Saturday and I hope it stays there for a good long while! I was thinking of you while going through my kidney stone adventure. I know you've had this too. It's funny how these things, in retrospect, encourage rather than discourage. Okay..I tell myself..you got through that. You can get through whatever else is ahead. So glad you are posting! Your bright spirit always shines through. Hugs, Barbara PS BTW, I have a good friend with FSH muscular dystrophy who had a temp ostomy bag too but did eventually get rid of it and back to " normal. " She found it quite a challenge, so you have my sympathies. _____ From: [mailto: ] On Behalf Of LILQT4U1984@... Sent: Tuesday, April 26, 2005 10:12 AM To: Subject: Re: Barbara Hi Barbara, I feel so a miss in not checking about you sooner. Please forgive me. How are YOU? How did the gamma knife procedure go? I was thinking of you when I was in Cleveland. I hope all went well. Please update me when you can. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 Maybe we could get together and be walking partners. I live on Water Street. My cell number is 408-1530. > > Hi Luci, > > > > I live off of highway 4. You would have to go out of your way to > come too > > Antioch. To bad, it would have been nice to ride with someone. > > > > Let me know how Thursday goes for you. > > > > Thank you > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 WOW we live really close to each other. I live behind the Tower Mart being built on the corner of Willow Pass and 's Avenue. I also have a few friends who live on Island View so I know exactly where you are!! I work 10-6 everyday but would love to get together, let me know what works for you. Huggles > > > Hi Luci, > > > > > > I live off of highway 4. You would have to go out of your way > to > > come too > > > Antioch. To bad, it would have been nice to ride with someone. > > > > > > Let me know how Thursday goes for you. > > > > > > Thank you > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 Great!! Just let me know what night works for you. Beginning Aug 22 I will be in class on Monday and Wednesdays. Huggles > > > > Hi Luci, > > > > > > > > I live off of highway 4. You would have to go out of your way > > to > > > come too > > > > Antioch. To bad, it would have been nice to ride with someone. > > > > > > > > Let me know how Thursday goes for you. > > > > > > > > Thank you > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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