Guest guest Posted September 29, 2005 Report Share Posted September 29, 2005 Steve, A gem of a doctor at last! Cheers! Barbara > MDA " evaluation " appt > > My new neuro doc there is Gilmore O'Neill. He listened to me, even including > some of my theories and opinions, asked a LOT of questions, and seemed to > REALLY care about my quality of life (not just " what an interesting test > tube " ). He took a detailed history over the course of two and a half hours. > He knows a heck of a lot about mito, and also read up on MY condition the > previous night. He agreed to order tests for enzymes, amino acids, > pyruvate/lactate (just static, for now) and basically anything I wanted. He > smiled as he gave his predictions for the test results, but ordered them > anyway ( " just guessing " he said). At the end, he apologized for not knowing > as much as I obviously did (which isn't true, except maybe for some of my > specifics), but that was just him being humble and encouragingly > " fellow-geek " . He's young, and down to earth, and a GEM!!! I almost hesitate > to say his name here, I'm afraid that he will end up mobbed by us all. :-) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2005 Report Share Posted September 29, 2005 Steve Having just had sleep study four, I want to encourage you to go ahead with it. It might show a need for CPAP, bi-PAP or one of the many others and that could really improve your sleep. I was having trouble getting to sleep, but mostly staying asleep and had my last one which showed a need to increase the pressure and change some other settings. I had a great nights sleep a couple of nights ago and then had to try to sleep last night without it, because the power was out. I ended up getting about 3 hours of sleep, so I will have to work to re-establish my sleep pattern again. Most first sleep studies are for 24 hours. The awaken you after 8 hours (some may be slightly different) and then have you lay down to nap every 2 hous, but only let you sleep a short time. If you tell them what your normal sleep time is, they might want to lengthen one of the naps to get your info. How fast you go to sleep while napping is an important piece of information. If they suggest a machine after the sleep study, encourage them to think of your increasing needs. There is a good article on the MDA website about using a machine with flexible settings. laurie > Good to hear from both of you guys. I guess we are the ony males here, not > counting lurkers and relatives (husbands, sons, etc.). Good luck with the > MDA appt, Kent. And I hope you're hanging in there, , best of luck > getting the services you need. > > Tuesday I had my MDA " initial eval " at the Boston clinic, which I pretty > obviously " passed " . I didn't meet the MDA coordinator, but I hope the system > is in place enough, at the screwy Neurology Associates of MGH office, that > I'll be approved for whatever the MDA can proviide. Already, the doc is > going to call them to see if they will fund my expensive CoQ10 OTC. > > My new neuro doc there is Gilmore O'Neill. He listened to me, even including > some of my theories and opinions, asked a LOT of questions, and seemed to > REALLY care about my quality of life (not just " what an interesting test > tube " ). He took a detailed history over the course of two and a half hours. > He knows a heck of a lot about mito, and also read up on MY condition the > previous night. He agreed to order tests for enzymes, amino acids, > pyruvate/lactate (just static, for now) and basically anything I wanted. He > smiled as he gave his predictions for the test results, but ordered them > anyway ( " just guessing " he said). At the end, he apologized for not knowing > as much as I obviously did (which isn't true, except maybe for some of my > specifics), but that was just him being humble and encouragingly > " fellow-geek " . He's young, and down to earth, and a GEM!!! I almost hesitate > to say his name here, I'm afraid that he will end up mobbed by us all. :-) > > ONE QUESTION FOR ANYONE: the doc wants me to do a sleep study (probable > apnea, possibly severe, also RLS), in fact he is ordering it unless I pull > out. I'm very apprehensive, because I sleep very poorly, from 4 AM until > noon (and I don't think I will be allowed to do that). Are there any options > to ask for, or anything I should know, to make this a bit easier and/or > safer? If I don't sleep at least somewhat, I appear only groggy but in fact > that's when I can pass out and fall down, i.e. my grogginess can be off the > chart, and I want this understood by the sleep techs. > > Steve D. > > > Date: Wed, 28 Sep 2005 19:13:15 -0000 > > > >Subject: Re: Hello I am back from nowhere > > > >, > >great to hear you are back in touch and getting some answers. I am > >still on hold waiting for my first appt with an MDA clinic doc in Nov. > > God Bless you, > >kent > > > > > > > Hey everybody, > > > > > > Sorry I haven't posted in awhile, but we finally got internet > >service running and things are finally started looking up here. I > >don't know if I told a lot of people but Dawn and I moved back up to > >Northeastern Ohio to be closer to family because I have been going > >downhill a lot. > > > > > > 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 September 30, 2005 Report Share Posted September 30, 2005 Well here's where I get to show my vast ignorance...what's a CPAP, a bi-PAP, and how do they differ? From all the talk on this list (about mask types etc.) I figure that these are some machines to provide air, or oxygen, under pressure. Are these things noisy? Fortunately, my wife sleeps VERY soundly. Are these hard to get used to, movement wise? I believe I move around a LOT in bed. I don't like to sleep on my back, and usually sleep on my side. I also frequently love a strange position, sort of on my chest, with my head somewhat sideways, " braced " against a pillow, tilted WAY back and partially burrowed into the mattress. I do this to help relieve the constant headaches. I would think this position especially is going to interfere with any tubing. I've also noticed that I often get rather stuffed up in my nasal breathing, and sometimes when this happens I wake up too soon with an especially bad headache. I've found when this happens that I can get a lot of relief from a decongestant. I've tried to find some environmental source, but this happens to me anywhere. Although I admit, my house including bedroom has a lot of dust and could very well have some mold or other stuff. In my current health, the thought of really dealing with this is rather overwhelming. Will the MDA fund such a device? Entirely? I currently have something called MassHealth Essential, which is some Mass. variant on pass-through Medicaid (HMO-style, free for me being poor), but I will be getting Medicare very soon. I don't know how these devices are covered, insurance-wise. Anyone, feel free to comment. Steve D. > Date: Thu, 29 Sep 2005 15:43:09 -0400 > >Subject: Re: MDA " evaluation " appt > >Steve > >Having just had sleep study four, I want to encourage you to go ahead >with it. It might show a need for CPAP, bi-PAP or one of the many >others and that could really improve your sleep. I was having trouble >getting to sleep, but mostly staying asleep and had my last one which >showed a need to increase the pressure and change some other settings. >I had a great nights sleep a couple of nights ago and then had to try >to sleep last night without it, because the power was out. I ended up >getting about 3 hours of sleep, so I will have to work to re-establish >my sleep pattern again. > >Most first sleep studies are for 24 hours. The awaken you after 8 >hours (some may be slightly different) and then have you lay down to >nap every 2 hous, but only let you sleep a short time. If you tell >them what your normal sleep time is, they might want to lengthen one >of the naps to get your info. How fast you go to sleep while napping >is an important piece of information. > >If they suggest a machine after the sleep study, encourage them to >think of your increasing needs. There is a good article on the MDA >website about using a machine with flexible settings. > >laurie > > > > Good to hear from both of you guys. I guess we are the ony males here, >not > > counting lurkers and relatives (husbands, sons, etc.). Good luck with >the > > MDA appt, Kent. And I hope you're hanging in there, , best of luck > > getting the services you need. > > > > Tuesday I had my MDA " initial eval " at the Boston clinic, which I pretty > > obviously " passed " . I didn't meet the MDA coordinator, but I hope the >system > > is in place enough, at the screwy Neurology Associates of MGH office, >that > > I'll be approved for whatever the MDA can proviide. Already, the doc is > > going to call them to see if they will fund my expensive CoQ10 OTC. > > > > My new neuro doc there is Gilmore O'Neill. He listened to me, even >including > > some of my theories and opinions, asked a LOT of questions, and seemed >to > > REALLY care about my quality of life (not just " what an interesting test > > tube " ). He took a detailed history over the course of two and a half >hours. > > He knows a heck of a lot about mito, and also read up on MY condition >the > > previous night. He agreed to order tests for enzymes, amino acids, > > pyruvate/lactate (just static, for now) and basically anything I wanted. >He > > smiled as he gave his predictions for the test results, but ordered them > > anyway ( " just guessing " he said). At the end, he apologized for not >knowing > > as much as I obviously did (which isn't true, except maybe for some of >my > > specifics), but that was just him being humble and encouragingly > > " fellow-geek " . He's young, and down to earth, and a GEM!!! I almost >hesitate > > to say his name here, I'm afraid that he will end up mobbed by us all. >:-) > > > > ONE QUESTION FOR ANYONE: the doc wants me to do a sleep study (probable > > apnea, possibly severe, also RLS), in fact he is ordering it unless I >pull > > out. I'm very apprehensive, because I sleep very poorly, from 4 AM until > > noon (and I don't think I will be allowed to do that). Are there any >options > > to ask for, or anything I should know, to make this a bit easier and/or > > safer? If I don't sleep at least somewhat, I appear only groggy but in >fact > > that's when I can pass out and fall down, i.e. my grogginess can be off >the > > chart, and I want this understood by the sleep techs. > > > > Steve D. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2005 Report Share Posted September 30, 2005 Steve A CPAP and bi-PAP are machines that deliver air under pressure. A CPAP is a constant pressure whereas the bi-PAP has the needed pressure when inhaling and backs down the pressure when exhaling. The masks have to fit right and are a bit uncomfortable in the beginning. I sleep on my side most of the time. I did have to learn not to get between side and stomach. The biggest thing about turning on your stomach is that the seal of the mask against your face is broken, so air is escaping. My first machine was a little bit noisy, but the newer one is quiet. Ask my sister as she is a light sleeper and we have shared hotel rooms with both machines. I think she prefers the machine to when I stop breathing. How about it sis? I'm off to see my neuro, so won't be back on until this evening. laurie > Well here's where I get to show my vast ignorance...what's a CPAP, a bi-PAP, > and how do they differ? From all the talk on this list (about mask types > etc.) I figure that these are some machines to provide air, or oxygen, under > pressure. > > Are these things noisy? Fortunately, my wife sleeps VERY soundly. > > Are these hard to get used to, movement wise? I believe I move around a LOT > in bed. I don't like to sleep on my back, and usually sleep on my side. I > also frequently love a strange position, sort of on my chest, with my head > somewhat sideways, " braced " against a pillow, tilted WAY back and partially > burrowed into the mattress. I do this to help relieve the constant > headaches. I would think this position especially is going to interfere with > any tubing. > > I've also noticed that I often get rather stuffed up in my nasal breathing, > and sometimes when this happens I wake up too soon with an especially bad > headache. I've found when this happens that I can get a lot of relief from a > decongestant. I've tried to find some environmental source, but this happens > to me anywhere. Although I admit, my house including bedroom has a lot of > dust and could very well have some mold or other stuff. In my current > health, the thought of really dealing with this is rather overwhelming. > > Will the MDA fund such a device? Entirely? I currently have something called > MassHealth Essential, which is some Mass. variant on pass-through Medicaid > (HMO-style, free for me being poor), but I will be getting Medicare very > soon. I don't know how these devices are covered, insurance-wise. > > Anyone, feel free to comment. > > Steve D. > > > Date: Thu, 29 Sep 2005 15:43:09 -0400 > > > >Subject: Re: MDA " evaluation " appt > > > >Steve > > > >Having just had sleep study four, I want to encourage you to go ahead > >with it. It might show a need for CPAP, bi-PAP or one of the many > >others and that could really improve your sleep. I was having trouble > >getting to sleep, but mostly staying asleep and had my last one which > >showed a need to increase the pressure and change some other settings. > >I had a great nights sleep a couple of nights ago and then had to try > >to sleep last night without it, because the power was out. I ended up > >getting about 3 hours of sleep, so I will have to work to re-establish > >my sleep pattern again. > > > >Most first sleep studies are for 24 hours. The awaken you after 8 > >hours (some may be slightly different) and then have you lay down to > >nap every 2 hous, but only let you sleep a short time. If you tell > >them what your normal sleep time is, they might want to lengthen one > >of the naps to get your info. How fast you go to sleep while napping > >is an important piece of information. > > > >If they suggest a machine after the sleep study, encourage them to > >think of your increasing needs. There is a good article on the MDA > >website about using a machine with flexible settings. > > > >laurie > > > > > > > Good to hear from both of you guys. I guess we are the ony males here, > >not > > > counting lurkers and relatives (husbands, sons, etc.). Good luck with > >the > > > MDA appt, Kent. And I hope you're hanging in there, , best of luck > > > getting the services you need. > > > > > > Tuesday I had my MDA " initial eval " at the Boston clinic, which I pretty > > > obviously " passed " . I didn't meet the MDA coordinator, but I hope the > >system > > > is in place enough, at the screwy Neurology Associates of MGH office, > >that > > > I'll be approved for whatever the MDA can proviide. Already, the doc is > > > going to call them to see if they will fund my expensive CoQ10 OTC. > > > > > > My new neuro doc there is Gilmore O'Neill. He listened to me, even > >including > > > some of my theories and opinions, asked a LOT of questions, and seemed > >to > > > REALLY care about my quality of life (not just " what an interesting test > > > tube " ). He took a detailed history over the course of two and a half > >hours. > > > He knows a heck of a lot about mito, and also read up on MY condition > >the > > > previous night. He agreed to order tests for enzymes, amino acids, > > > pyruvate/lactate (just static, for now) and basically anything I wanted. > >He > > > smiled as he gave his predictions for the test results, but ordered them > > > anyway ( " just guessing " he said). At the end, he apologized for not > >knowing > > > as much as I obviously did (which isn't true, except maybe for some of > >my > > > specifics), but that was just him being humble and encouragingly > > > " fellow-geek " . He's young, and down to earth, and a GEM!!! I almost > >hesitate > > > to say his name here, I'm afraid that he will end up mobbed by us all. > >:-) > > > > > > ONE QUESTION FOR ANYONE: the doc wants me to do a sleep study (probable > > > apnea, possibly severe, also RLS), in fact he is ordering it unless I > >pull > > > out. I'm very apprehensive, because I sleep very poorly, from 4 AM until > > > noon (and I don't think I will be allowed to do that). Are there any > >options > > > to ask for, or anything I should know, to make this a bit easier and/or > > > safer? If I don't sleep at least somewhat, I appear only groggy but in > >fact > > > that's when I can pass out and fall down, i.e. my grogginess can be off > >the > > > chart, and I want this understood by the sleep techs. > > > > > > Steve D. > > > > > > 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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