Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 Does any one know if there are special instructions to be followed during a sleep study when the problem is weakening respiratory muscles? I am supposed to have another sleep study and the sleep lab I am planning to use seems to be thrown by the idea that they would not be looking just for the usual things like apnea, obstruction, etc. Any ideas you have or any references I can read would really help me. Thanks, Pat K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 This post leads me to wonder: Is sleep apnea caused by or frequently associated with Mito (even in the absence of respiratory muscle weakness)? Randall Sleep study instructions? Does any one know if there are special instructions to be followed during a sleep study when the problem is weakening respiratory muscles? I am supposed to have another sleep study and the sleep lab I am planning to use seems to be thrown by the idea that they would not be looking just for the usual things like apnea, obstruction, etc. Any ideas you have or any references I can read would really help me. Thanks, Pat K ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.394 / Virus Database: 268.8.4/363 - Release Date: 6/13/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 How many channels do they use/moniter? We only have diagnostic success when 20+ channels are evaluated. Pat PatsyAnnK@...> wrote: Does any one know if there are special instructions to be followed during a sleep study when the problem is weakening respiratory muscles? I am supposed to have another sleep study and the sleep lab I am planning to use seems to be thrown by the idea that they would not be looking just for the usual things like apnea, obstruction, etc. Any ideas you have or any references I can read would really help me. Thanks, Pat K Joanne Kocourek (mom to , lies, and ) visit us at: http://www.caringbridge.org/il/annakris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 Sleep apnea is common with mito. Many use either a C-pap aor bi-pap when sleeping. My brother has an exreme form of sleep apnea. His seems to be more neurologic in origin than due to the diaphragm and intercostal muscle weakness. I have a very mild form of apnea and do not use anything to treat it. I have too many problems with my insurance to bother with anything less than the essentials. a (MELAS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 Randall Yes. It is the first tests that were ordered for me after my diagnosis. I have sleep studies done yearly to adjust pressure settings. laurie > > > > > > > This post leads me to wonder: Is sleep apnea caused by or frequently > associated with Mito (even in the absence of respiratory muscle weakness)? > > Randall > > > Sleep study instructions? > > Does any one know if there are special instructions to be followed > during a sleep study when the problem is weakening respiratory muscles? > I am supposed to have another sleep study and the sleep lab I am > planning to use seems to be thrown by the idea that they would not be > looking just for the usual things like apnea, obstruction, etc. Any > ideas you have or any references I can read would really help me. > Thanks, Pat K > > ---------------------------------------------------------- > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.1.394 / Virus Database: 268.8.4/363 - Release Date: 6/13/2006 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 Sleep apnea and other sleep disorders are common in individuals with mitochondrial disease. They are not specific to muscle weakness. Some individuals have central apnea related to signaling from the brain (or absence of the signaling). other people tend to hypoventilate or have a variety of differing sleep related abnormallities. Randall Bosin ranbo1@...> wrote: This post leads me to wonder: Is sleep apnea caused by or frequently associated with Mito (even in the absence of respiratory muscle weakness)? Randall Sleep study instructions? Does any one know if there are special instructions to be followed during a sleep study when the problem is weakening respiratory muscles? I am supposed to have another sleep study and the sleep lab I am planning to use seems to be thrown by the idea that they would not be looking just for the usual things like apnea, obstruction, etc. Any ideas you have or any references I can read would really help me. Thanks, Pat K ---------------------------------------------------------- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.394 / Virus Database: 268.8.4/363 - Release Date: 6/13/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 Is the apnea usually the result of muscle weakness? I have apnea, my sister has apnea and I (and a doctor) suspect my mother has it, but she hasn't been tested. Some neuros have suggested that there is some familial myopathy going on among the 3 of us, so this might fit. Randall Sleep study instructions? Does any one know if there are special instructions to be followed during a sleep study when the problem is weakening respiratory muscles? I am supposed to have another sleep study and the sleep lab I am planning to use seems to be thrown by the idea that they would not be looking just for the usual things like apnea, obstruction, etc. Any ideas you have or any references I can read would really help me. Thanks, Pat K ---------------------------------------------------------- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.394 / Virus Database: 268.8.4/363 - Release Date: 6/13/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 Mito patients may have a variety of sleep issues. This can be caused by a floppy airway, autonomic nervous system dysfunction, muscular weakness,other neuro issues, etc. I'm at the mito conference right now. There are four probable mito patients in the room. Two use vents, one uses a pulse ox, and I am supposed to use CPAP but don't (I'm bad I know). Every one of these individuals has a different clinical indication for the specific equipment that they use. Randall Bosin ranbo1@...> wrote: This post leads me to wonder: Is sleep apnea caused by or frequently associated with Mito (even in the absence of respiratory muscle weakness)? Randall Sleep study instructions? Does any one know if there are special instructions to be followed during a sleep study when the problem is weakening respiratory muscles? I am supposed to have another sleep study and the sleep lab I am planning to use seems to be thrown by the idea that they would not be looking just for the usual things like apnea, obstruction, etc. Any ideas you have or any references I can read would really help me. Thanks, Pat K ---------------------------------------------------------- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.394 / Virus Database: 268.8.4/363 - Release Date: 6/13/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2006 Report Share Posted June 15, 2006 Randall Sleep apnea can be caused by many things in all people, including those with mito. It is often a combination of things, especially in mito, one of which is weakness. At least this is how it is in my case. laurie > > > > > > > Is the apnea usually the result of muscle weakness? > > I have apnea, my sister has apnea and I (and a doctor) suspect my mother > has it, but she hasn't been tested. Some neuros have suggested that there is > some familial myopathy going on among the 3 of us, so this might fit. > > Randall > > > Sleep study instructions? > > Does any one know if there are special instructions to be followed > during a sleep study when the problem is weakening respiratory muscles? > I am supposed to have another sleep study and the sleep lab I am > planning to use seems to be thrown by the idea that they would not be > looking just for the usual things like apnea, obstruction, etc. Any > ideas you have or any references I can read would really help me. > Thanks, Pat K > > ---------------------------------------------------------- > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.1.394 / Virus Database: 268.8.4/363 - Release Date: 6/13/2006 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2006 Report Share Posted June 15, 2006 Obstructive apnea is often a result of muscle weakness. Central apnea is from the brain's control center. There is something called familial apnea which is hereditary and central in nature rather than related to muscle weakness. Randall Bosin ranbo1@...> wrote: Is the apnea usually the result of muscle weakness? I have apnea, my sister has apnea and I (and a doctor) suspect my mother has it, but she hasn't been tested. Some neuros have suggested that there is some familial myopathy going on among the 3 of us, so this might fit. Randall Sleep study instructions? Does any one know if there are special instructions to be followed during a sleep study when the problem is weakening respiratory muscles? I am supposed to have another sleep study and the sleep lab I am planning to use seems to be thrown by the idea that they would not be looking just for the usual things like apnea, obstruction, etc. Any ideas you have or any references I can read would really help me. Thanks, Pat K ---------------------------------------------------------- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.394 / Virus Database: 268.8.4/363 - Release Date: 6/13/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2006 Report Share Posted June 16, 2006 Thanks for all of the responses. I'll ask about the number of channels used. I was told previously that I hypoventilate at night and my understanding at that time was it was because of weakening muscles. Are these contected or two separate problems? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2006 Report Share Posted June 16, 2006 Pat I breath very slowly (2-3 times a min. at night or when tired). It is felt to be both central (my brain trying to rest my fatigued respiratory muscles) and due to muscle weakness. It was felt up until recently that it was primarily that the muscles were fatigued rather than weak. If they are going to try various different pressure options, ask them if they can try a " flex " setting. I am not able to trigger the bi-pap, but do great on the " flex " . It is just like normal breathing. Good luck! laurie > > > > > > > Thanks for all of the responses. I'll ask about the number of channels > used. I was told previously that I hypoventilate at night and my > understanding at that time was it was because of weakening muscles. Are > these contected or two separate problems? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2006 Report Share Posted June 17, 2006 I emailed Dr. Bach to ask about possible sleep study instructions. He responded that I should go to his facility for evaluation, that his place is the only place to go. He thinks that people with neuromuscular disorders should use IPPV (intermittent positive pressure ventilation). Does anyone know anything about this? I'm hoping I can find someone closer to the Detroit, Michigan area to consult. I saw that it is listed as a service offered at U of M Hospital in Ann Arbor but I don't know anything about the doctors there. Anyone out there who does? Pat K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2006 Report Share Posted June 18, 2006 Hi my name is Mike, I was diagnosed in march of this year through U of M neurology clinic. My Dr. is Dr. . So far I have been very pleased with U of M and the drs. But good luck trying to get an appointment there, it takes several months and you need a referral. You can search U of M hospital and get a directory of all doctors and services performed there. Re: Sleep study instructions? I emailed Dr. Bach to ask about possible sleep study instructions. He responded that I should go to his facility for evaluation, that his place is the only place to go. He thinks that people with neuromuscular disorders should use IPPV (intermittent positive pressure ventilation). Does anyone know anything about this? I'm hoping I can find someone closer to the Detroit, Michigan area to consult. I saw that it is listed as a service offered at U of M Hospital in Ann Arbor but I don't know anything about the doctors there. Anyone out there who does? Pat K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 I also go to the neuromuscular clinic at University of Michigan I have seen Dr Guis and Dr London. The first time appt does take a while to get into, but followup appts are not quite as bad. buddy325@... wrote: Hi my name is Mike, I was diagnosed in march of this year through U of M neurology clinic. My Dr. is Dr. . So far I have been very pleased with U of M and the drs. But good luck trying to get an appointment there, it takes several months and you need a referral. You can search U of M hospital and get a directory of all doctors and services performed there. Re: Sleep study instructions? I emailed Dr. Bach to ask about possible sleep study instructions. He responded that I should go to his facility for evaluation, that his place is the only place to go. He thinks that people with neuromuscular disorders should use IPPV (intermittent positive pressure ventilation). Does anyone know anything about this? I'm hoping I can find someone closer to the Detroit, Michigan area to consult. I saw that it is listed as a service offered at U of M Hospital in Ann Arbor but I don't know anything about the doctors there. Anyone out there who does? Pat K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 I saw Dr. gruis 2yrs ago and she told me I had benign fasiculation syndrome and sent me home with a script for some quinine. Last Sept. I ended up in the emergency room because everything intensified and progressed. They gave me a referal to get back into neuro which took another almost 3 months. At that time I saw Dr. and Dr. London. Dr. London performed an emg and it ruled out motor neuron disease which Dr. had once suspected. Dr. told me he would like to perform another biopsy on my leg, Dr. Gruis performed the biopsy, and two weeks later I was diagnosed with mito. Mike Re: Sleep study instructions? I emailed Dr. Bach to ask about possible sleep study instructions. He responded that I should go to his facility for evaluation, that his place is the only place to go. He thinks that people with neuromuscular disorders should use IPPV (intermittent positive pressure ventilation). Does anyone know anything about this? I'm hoping I can find someone closer to the Detroit, Michigan area to consult. I saw that it is listed as a service offered at U of M Hospital in Ann Arbor but I don't know anything about the doctors there. Anyone out there who does? Pat K Quote Link to comment Share on other sites More sharing options...
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