Guest guest Posted April 11, 2005 Report Share Posted April 11, 2005 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 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 Sunny My mito seemed to be triggered (actually brought to the point that I knew something was wrong) by the riggers of child birth. laurie > > 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 I had spinal surgery about 18 months before I got my first mito symptoms, and my mom passed away about 6 weeks before my first symptoms. I believe there was a court case where a woman had disk surgery, and developed a neuromuscular disease afterwards - they ruled that she contracted the disease because of the spinal surgery. My general understanding is that humans are not supposed to survive certain injuries (i.e., we would die if in the wild), so healing of the spine, spinal nerves, and spinal cord is not " programmed " well by the body. I'm not sure if this is considered autoimmune per se, but that comes to mind when I read about the possibility of spinal surgery or injury being related to neuromuscular diseases. Since I had a failed spinal tap and no other tries, they don't know if I have something going on with my CSF, such as high or low pressure, but changes in CSF might be due to spinal injury. Has anyone else tested for high or low CSF (cerebrospinal fluid) pressure? 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 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: â€¢ï€ 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. â€¢ï€ 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. The 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 Nï2) 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. However, nitric oxide inhibits cis-acotinase (a citric acid cycle enzyme) and the iron-containing cytochromes of the respiratory chain. Therefore, Nïï€²ï€ 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) > 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 -As I understand it... Metformin has a rare side effect of lactic acidosis in a small group that is susceptible to it, which triggered rhabdomyolysis, which destroyed muscle cells, which left more mito- affected muscle cells behind to try to do the work. But autoimmune process is really kicked up right now, not sure of the connection. Heidi -- In , " ohgminion " wrote: > > I had spinal surgery about 18 months before I got my first mito > symptoms, and my mom passed away about 6 weeks before my first > symptoms. I believe there was a court case where a woman had disk > surgery, and developed a neuromuscular disease afterwards - they > ruled that she contracted the disease because of the spinal surgery. > > My general understanding is that humans are not supposed to survive > certain injuries (i.e., we would die if in the wild), so healing of > the spine, spinal nerves, and spinal cord is not " programmed " well by > the body. I'm not sure if this is considered autoimmune per se, but > that comes to mind when I read about the possibility of spinal > surgery or injury being related to neuromuscular diseases. > > Since I had a failed spinal tap and no other tries, they don't know > if I have something going on with my CSF, such as high or low > pressure, but changes in CSF might be due to spinal injury. Has > anyone else tested for high or low CSF (cerebrospinal fluid) pressure? > > 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 -As I understand it... Metformin has a rare side effect of lactic acidosis in a small group that is susceptible to it, which triggered rhabdomyolysis, which destroyed muscle cells, which left more mito- affected muscle cells behind to try to do the work. But autoimmune process is really kicked up right now, not sure of the connection. Heidi -- In , " ohgminion " wrote: > > I had spinal surgery about 18 months before I got my first mito > symptoms, and my mom passed away about 6 weeks before my first > symptoms. I believe there was a court case where a woman had disk > surgery, and developed a neuromuscular disease afterwards - they > ruled that she contracted the disease because of the spinal surgery. > > My general understanding is that humans are not supposed to survive > certain injuries (i.e., we would die if in the wild), so healing of > the spine, spinal nerves, and spinal cord is not " programmed " well by > the body. I'm not sure if this is considered autoimmune per se, but > that comes to mind when I read about the possibility of spinal > surgery or injury being related to neuromuscular diseases. > > Since I had a failed spinal tap and no other tries, they don't know > if I have something going on with my CSF, such as high or low > pressure, but changes in CSF might be due to spinal injury. Has > anyone else tested for high or low CSF (cerebrospinal fluid) pressure? > > 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 RH, Hi, I am interested to know where you read about the connection of the spine trama and Mito. My younger brother has been through it and back with an injury to his spine at a young age that has continued to just decentigrate at a very slow pace over the years. My sisters and I as well as our kids all have Mito, but we had not thought about our brother's condition being connected to Mito. Thanks O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2005 Report Share Posted April 11, 2005 My aortic valve replacement was a few months before I started getting sick. This is curious. So, how does this work? It's in our genes, and a major trama to our bodies sets it off? Do many people have this experience? Kim > > > > > > > > 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 My aortic valve replacement was a few months before I started getting sick. This is curious. So, how does this work? It's in our genes, and a major trama to our bodies sets it off? Do many people have this experience? Kim > > > > > > > > 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 All genetic disorders do not manifest at birth or an early age. Age of onset varies tremendously with different genetic disorders and even within a particular disorder. Huntington's, for example, often appears in the 30s or 40s, even though the defect is there from birth. CPT deficiency can manifest anywhere from birth to middle age. I have a friend with FSH muscular dystrophy and she was in her late teens before it became clear that she had the same disease as her mother and grandmother. My symptoms surfaced in a major way at age 19, while my son had significant symptoms as a toddler. There are many reasons that impact age of onset, including genetic factors and environmental factors. Dr. Vladutiu, a molecular geneticist, says there is much yet to learn about triggers in genetic diseases. Major trauma is not necessary in many cases. The disease surfaces on its own, in its own time. In general, it is thought that an earlier age of onset correlates with a more severe course in genetic disease, but this is not true in our family or in other cases that have been reported. There are many exceptions to the " rules, " and as our knowledge grows, the " rules " change. Barbara _____ From: klaga5 Sent: Monday, April 11, 2005 3:49 PM To: Subject: Re: Mito Trigger? My aortic valve replacement was a few months before I started getting sick. This is curious. So, how does this work? It's in our genes, and a major trama to our bodies sets it off? Do many people have this experience? Kim > > > > > > > > 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 Kim Many adults seem to recognize they have a problem or their symptoms worsen with stress like surgery, overdoing physically or some emotional trauma. Anything that requires a lot of energy, like fighting off a virus, damages the mitochondria and this creates more free radicals which causes more damage. Then you have to figure in the fact that in some cells the good mito are replicating and in others it is the bad mito. It is kind of like putting water into a container 1 teaspoon at a time. Nothing happens and then just one more teaspoon makes it over-flow. Looking back, I had symptoms as a child, but they were mild. It is impossible to know abnormal when you haven't known normal. laurie > > > My aortic valve replacement was a few months before I started > getting sick. This is curious. So, how does this work? It's in > our genes, and a major trama to our bodies sets it off? Do many > people have this experience? > Kim > > > > > > > > > > > > > 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 >It is impossible to know abnormal when you haven't known normal. > > laurie Ya, I understand what you mean. I did have breathing problems even as a child. I looked like a skeleton at 13. I couldn't gain weight. The first time they thought I had a stroke, I was 21. Muscle twitches and cramps I can date back 10-12 years ago. Even when I was pregnant with my first child (16 years ago) I had times when I couldn't walk. With my pregnancy for my second child (14 years ago) I was so exhausted I couldn't get off the couch for months. And on and on. I look back now and wonder why I never went to a doctor for this stuff. I guess it just kicked into hyperdrive 3-4 years ago. Just before this I had yellow eyes for a while and didn't go in for that either. I wonder if that was a factor. Who knows. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2005 Report Share Posted April 11, 2005 Kim, I think that sums things up rather well. klaga5 wrote: >My aortic valve replacement was a few months before I started >getting sick. This is curious. So, how does this work? It's in >our genes, and a major trama to our bodies sets it off? Do many >people have this experience? >Kim > > >>> >>> >>> >>>> 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 Barbara, I am so glad to see you with us again! Please do take care! Sunny > All genetic disorders do not manifest at birth or an early age. Age of > onset > varies tremendously with different genetic disorders and even within a > particular disorder. Huntington's, for example, often appears in the > 30s or > 40s, even though the defect is there from birth. CPT deficiency can > manifest > anywhere from birth to middle age. I have a friend with FSH muscular > dystrophy and she was in her late teens before it became clear that > she had > the same disease as her mother and grandmother. My symptoms surfaced > in a > major way at age 19, while my son had significant symptoms as a > toddler. > There are many reasons that impact age of onset, including genetic > factors > and environmental factors. Dr. Vladutiu, a molecular geneticist, says > there > is much yet to learn about triggers in genetic diseases. Major trauma > is not > necessary in many cases. The disease surfaces on its own, in its own > time. > In general, it is thought that an earlier age of onset correlates > with a > more severe course in genetic disease, but this is not true in our > family or > in other cases that have been reported. There are many exceptions to > the > " rules, " and as our knowledge grows, the " rules " change. > > > > Barbara > > > > _____ > > From: klaga5 > Sent: Monday, April 11, 2005 3:49 PM > To: > Subject: Re: Mito Trigger? > > > > > My aortic valve replacement was a few months before I started > getting sick. This is curious. So, how does this work? It's in > our genes, and a major trama to our bodies sets it off? Do many > people have this experience? > Kim > > > > > > > > > > > > > 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 Barbara, I am so glad to see you with us again! Please do take care! Sunny > All genetic disorders do not manifest at birth or an early age. Age of > onset > varies tremendously with different genetic disorders and even within a > particular disorder. Huntington's, for example, often appears in the > 30s or > 40s, even though the defect is there from birth. CPT deficiency can > manifest > anywhere from birth to middle age. I have a friend with FSH muscular > dystrophy and she was in her late teens before it became clear that > she had > the same disease as her mother and grandmother. My symptoms surfaced > in a > major way at age 19, while my son had significant symptoms as a > toddler. > There are many reasons that impact age of onset, including genetic > factors > and environmental factors. Dr. Vladutiu, a molecular geneticist, says > there > is much yet to learn about triggers in genetic diseases. Major trauma > is not > necessary in many cases. The disease surfaces on its own, in its own > time. > In general, it is thought that an earlier age of onset correlates > with a > more severe course in genetic disease, but this is not true in our > family or > in other cases that have been reported. There are many exceptions to > the > " rules, " and as our knowledge grows, the " rules " change. > > > > Barbara > > > > _____ > > From: klaga5 > Sent: Monday, April 11, 2005 3:49 PM > To: > Subject: Re: Mito Trigger? > > > > > My aortic valve replacement was a few months before I started > getting sick. This is curious. So, how does this work? It's in > our genes, and a major trama to our bodies sets it off? Do many > people have this experience? > Kim > > > > > > > > > > > > > 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 A connection of spine trauma and mito is intriguing. I certainly have had my share of spinal problems. Sunny > RH, > > Hi, I am interested to know where you read about the connection > of the > spine trama and Mito. My younger brother has been through it and > back with an > injury to his spine at a young age that has continued to just > decentigrate at > a very slow pace over the years. My sisters and I as well as our > kids all > have Mito, but we had not thought about our brother's condition being > connected > to Mito. > > Thanks > > O > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2005 Report Share Posted April 11, 2005 A connection of spine trauma and mito is intriguing. I certainly have had my share of spinal problems. Sunny > RH, > > Hi, I am interested to know where you read about the connection > of the > spine trama and Mito. My younger brother has been through it and > back with an > injury to his spine at a young age that has continued to just > decentigrate at > a very slow pace over the years. My sisters and I as well as our > kids all > have Mito, but we had not thought about our brother's condition being > connected > to Mito. > > Thanks > > O > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2005 Report Share Posted April 12, 2005 My *trigger* would *appear* to have been the simvaststin drug which made me really floppy and weak for a couple of years on top of drugs for hypothyroidism... IMHO these things possibly exacabated an underlying condition..or maybe caused it..I will never know. Gillian > > > > > 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 12, 2005 Report Share Posted April 12, 2005 My *trigger* would *appear* to have been the simvaststin drug which made me really floppy and weak for a couple of years on top of drugs for hypothyroidism... IMHO these things possibly exacabated an underlying condition..or maybe caused it..I will never know. Gillian > > > > > 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 12, 2005 Report Share Posted April 12, 2005 My *trigger* would *appear* to have been the simvaststin drug which made me really floppy and weak for a couple of years on top of drugs for hypothyroidism... IMHO these things possibly exacabated an underlying condition..or maybe caused it..I will never know. Gillian > > > > > 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 12, 2005 Report Share Posted April 12, 2005 This is very interesting.I had to have gynae surgery 8 years ago before my Mito. diagnosis, often this type of surgery is done using an epidural these days..We were told afterwards that they had failed to do it that way because they could not 'get in' to place the anathaestic, 4 years later they did an MRI of my lumbar spine and found 'degenerative discs' which explained apparently the epidural problem..as a result of this some Consultant has put on my file NO CSF to be attempted, I don't really understand it all to be honest...but I do know that they also found autoimmune rheumatoid antibodies using 2 different screening methods.. Gillian > > > > > > > > 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 12, 2005 Report Share Posted April 12, 2005 we are convinced atorvastatin--lipitor--caused a complex I defect for both my husband and another friend --both took lipitor for 4+ yrs. for these guys, parkinsonism has been the major result of complex I dysfunction--- maude In , " gillianstumps " wrote: > > My *trigger* would *appear* to have been the simvaststin drug which > made me really floppy and weak for a couple of years on top of drugs > for hypothyroidism... > IMHO these things possibly exacabated an underlying condition..or > maybe caused it..I will never know. > Gillian > > > > > > > > > > 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 12, 2005 Report Share Posted April 12, 2005 Hi Gillian, Have your symptoms improved when you stoped taking the lipitor. I have a friend who's father I think was taking lipitor for years and they think he might have ALS any information would greatly help thanks. Hugs, Donna K ---- mauderegan mdlynlevy@...> wrote: > > > we are convinced atorvastatin--lipitor--caused a complex I defect > for both my husband and another friend --both took lipitor for 4+ > yrs. for these guys, parkinsonism has been the major result of > complex I dysfunction--- maude In > , " gillianstumps " wrote: > > > > My *trigger* would *appear* to have been the simvaststin drug > which > > made me really floppy and weak for a couple of years on top of > drugs > > for hypothyroidism... > > IMHO these things possibly exacabated an underlying condition..or > > maybe caused it..I will never know. > > Gillian > > > > > > > > > > > > > > > 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 12, 2005 Report Share Posted April 12, 2005 Interesting, Gillian. I have a consistent positive RA factor - I run 150 - 180, when under 20 is normal. - it was 600 years ago, after my second surgery, and I do not have RA. > > This is very interesting.I had to have gynae surgery 8 years ago > before my Mito. diagnosis, often this type of surgery is done using > an epidural these days..We were told afterwards that they had failed > to do it that way because they could not 'get in' to place the > anathaestic, 4 years later they did an MRI of my lumbar spine and > found 'degenerative discs' which explained apparently the epidural > problem..as a result of this some Consultant has put on my file NO > CSF to be attempted, I don't really understand it all to be > honest...but I do know that they also found autoimmune rheumatoid > antibodies using 2 different screening methods.. > > Gillian > > > > > > > > > > > > > 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...
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