Guest guest Posted May 8, 2004 Report Share Posted May 8, 2004 Unfortunately Janet no one at U of M specializes in mito. They have a Neuromuscular Clinic however and they do have a few mito patients so at least they're familiar with it. My doc actually does research in ALS and diabetic neuropathy. If you or your husband have any concerns while your here just call Neurology and explain your situation. I'm sure they'd be able to help you (734)936-9010. Just keep in mind new patients can wait several months for an appointment and my doc doesn't take new patients. It seems like she's always in the lab or traveling anymore. When it comes to emergency stuff I've had mixed results in how they handled my case. Depends upon which Attending is working. From South Lyon you're looking at about a 25-30 minute drive. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2004 Report Share Posted May 8, 2004 thanks for the info. I was actually looking for the emergency info--although I have only had a few major blackouts or seizures in my life, my symptoms are becoming worse. Better to have someplace that actually has some knowledge if there is a choice of where to go. From my sister in law's house to like downtown is about 30 miles as they live out in the country. My sister n law actually is an lpn by trade although she worked many years for the visiting nurses association in Ann Arbor. She now mostly does volunteer work at the university and is involved in alot of projects there. I think they are mostly to do with the library there. Anyway, thanks for the info and if we do go this summer I will take this info along. I do where an id necklace with my primary physician here in Green Bay's number on it also. Re: FOR BUG--MICHIGAN > Unfortunately Janet no one at U of M specializes in mito. They have > a Neuromuscular Clinic however and they do have a few mito patients > so at least they're familiar with it. My doc actually does research > in ALS and diabetic neuropathy. If you or your husband have any > concerns while your here just call Neurology and explain your > situation. I'm sure they'd be able to help you (734)936-9010. Just > keep in mind new patients can wait several months for an appointment > and my doc doesn't take new patients. It seems like she's always in > the lab or traveling anymore. > > When it comes to emergency stuff I've had mixed results in how they > handled my case. Depends upon which Attending is working. From > South Lyon you're looking at about a 25-30 minute drive. > > > > > 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 May 8, 2004 Report Share Posted May 8, 2004 That's an excellent idea about wearing the ID tag. I do the same. In an emergency you could obviously end up in a 50 bed hospital ! You just never know. If you haven't already...make sure you carry a list in your purse of medications, your doctor info, disease info, allergies and emergency contacts. I also carry a copy of my living will and a copy of Doc Cohen's list of possible anesthesia concerns. Always better to be over-prepared. As I mentioned, even at U of M I've had mixed results in the ER. They just don't have time to deal with us. They get a heck of a lot of trauma there. I told my doc recently that unless I'm missing an appendage you won't find me in the ER ! Only because I've waited over 6 hours before, only to turn right back around with no treatment and exposure to all those sick people. Best of luck and hope your trip is fantastic. I hope the ER won't be on your list of tourist attractions. bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2004 Report Share Posted May 9, 2004 < > Hi Bug, I'm pretty much a newbie currently exploring/pursuing possible adult-onset mito as an answer to my mystifying health problems and I'm full of questions. You mentioned anethesia concerns. Does anesthesia generally carry concerns, or problems for mitos? I ask this because I have had some rather weird expeiences with dental local anesthesia over the years, such that all my dental work has to be done without without any pain killing substances ........a real " trip " when I had all my amalgam fillings replaced. Thanks, Anita in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2004 Report Share Posted May 9, 2004 < > Hi Bug, I'm pretty much a newbie currently exploring/pursuing possible adult-onset mito as an answer to my mystifying health problems and I'm full of questions. You mentioned anethesia concerns. Does anesthesia generally carry concerns, or problems for mitos? I ask this because I have had some rather weird expeiences with dental local anesthesia over the years, such that all my dental work has to be done without without any pain killing substances ........a real " trip " when I had all my amalgam fillings replaced. Thanks, Anita in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2004 Report Share Posted May 9, 2004 Here is the article. I hope it helps. Anita wrote: >< concerns.>> > >Hi Bug, I'm pretty much a newbie currently exploring/pursuing >possible adult-onset mito as an answer to my mystifying health >problems and I'm full of questions. You mentioned anethesia >concerns. Does anesthesia generally carry concerns, or >problems for mitos? I ask this because I have had some rather >weird expeiences with dental local anesthesia over the years, >such that all my dental work has to be done without without any >pain killing substances ........a real " trip " when I had all my >amalgam fillings replaced. > >Thanks, >Anita in PA > > > > > > > > > >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 May 9, 2004 Report Share Posted May 9, 2004 Anita I have problems with local anaesthesia and usually have dental work done without anything. I break out with hives from the preservative in the local. Even if given without the preservative, it takes much longer and more anaesthesia to work and then it takes 12-24 hours to stop working. laurie > > Reply-To: > Date: Sun, 09 May 2004 05:45:49 -0700 > To: > Subject: Re: Re: FOR BUG--MICHIGAN > > Here is the article. I hope it helps. > > > > Anita wrote: > >> < > concerns.>> >> >> Hi Bug, I'm pretty much a newbie currently exploring/pursuing >> possible adult-onset mito as an answer to my mystifying health >> problems and I'm full of questions. You mentioned anethesia >> concerns. Does anesthesia generally carry concerns, or >> problems for mitos? I ask this because I have had some rather >> weird expeiences with dental local anesthesia over the years, >> such that all my dental work has to be done without without any >> pain killing substances ........a real " trip " when I had all my >> amalgam fillings replaced. >> >> Thanks, >> Anita in PA >> >> >> >> >> >> >> >> >> >> 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 May 9, 2004 Report Share Posted May 9, 2004 , Thank you SO much for sending me this info on anesthesia from Dr. Cohen via e-mail atachment. I'm still in the process of trying to process a huge amount of mito info and am in a " waiting pattern " awaiting Dr. Gropman's final decision as to whether she will see me at her NIH neurogenetics clinic. This info might well explain my very abnormal response to local anesthesia. I'm glad I don't have any surgery planned!!!! Thanks and Best Wishes, Anita in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2004 Report Share Posted May 9, 2004 , Thank you SO much for sending me this info on anesthesia from Dr. Cohen via e-mail atachment. I'm still in the process of trying to process a huge amount of mito info and am in a " waiting pattern " awaiting Dr. Gropman's final decision as to whether she will see me at her NIH neurogenetics clinic. This info might well explain my very abnormal response to local anesthesia. I'm glad I don't have any surgery planned!!!! Thanks and Best Wishes, Anita in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2004 Report Share Posted May 9, 2004 Hi Laurie, It's very interesting and helpful to hear of your history with dental anethesia. Thanks so much for sharing your experiences. It's nice to find someone else who " toughs it out at the dentist " . I have a subliminal " pain reduction " tape and show up with my Walkman and headphones. Then I crank it up as high as I can tolerate and my dentist works FAST! I figure it's a better choice to experience severe short-lived pain, than to have all the nerves on one side of my entire head scream at me for a week. It's an especially important concern for me because I'm a profession musician and use my MOUTH to earn my living. Do mitos generally have more allergies or reactions to meds than other people? My doc and I have a pact now that I won't take on ANY meds unless I'm dying, because so many of them have caused reactions in the past. I can manage most herbs, nutritional supplments and homeopathy, so that's what I use. Thanks and Best Wishes, Anita in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2004 Report Share Posted May 9, 2004 Hi Laurie, It's very interesting and helpful to hear of your history with dental anethesia. Thanks so much for sharing your experiences. It's nice to find someone else who " toughs it out at the dentist " . I have a subliminal " pain reduction " tape and show up with my Walkman and headphones. Then I crank it up as high as I can tolerate and my dentist works FAST! I figure it's a better choice to experience severe short-lived pain, than to have all the nerves on one side of my entire head scream at me for a week. It's an especially important concern for me because I'm a profession musician and use my MOUTH to earn my living. Do mitos generally have more allergies or reactions to meds than other people? My doc and I have a pact now that I won't take on ANY meds unless I'm dying, because so many of them have caused reactions in the past. I can manage most herbs, nutritional supplments and homeopathy, so that's what I use. Thanks and Best Wishes, Anita in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2004 Report Share Posted May 9, 2004 Anita It seems that many of us have adverse reactions to things. In our family we all have allergies, so it would be hard to base things on this family. The next thing I am going to request at the dentists is something to hold my mouth open and my jaws start to cramp, and it is really hard to hold my mouth open for long. Then there is the myoclonus - I would want to have a mouth jerk and bite the dentist. laurie > > Reply-To: > Date: Sun, 09 May 2004 14:55:42 -0000 > To: > Subject: Re: FOR BUG--MICHIGAN > > Hi Laurie, It's very interesting and helpful to hear of your history > with dental anethesia. Thanks so much for sharing your > experiences. It's nice to find someone else who " toughs it out at > the dentist " . > > I have a subliminal " pain reduction " tape and show up with my > Walkman and headphones. Then I crank it up as high as I can > tolerate and my dentist works FAST! I figure it's a better choice to > experience severe short-lived pain, than to have all the nerves > on one side of my entire head scream at me for a week. It's an > especially important concern for me because I'm a profession > musician and use my MOUTH to earn my living. > > Do mitos generally have more allergies or reactions to meds > than other people? My doc and I have a pact now that I won't take > on ANY meds unless I'm dying, because so many of them have > caused reactions in the past. I can manage most herbs, > nutritional supplments and homeopathy, so that's what I use. > > Thanks and Best Wishes, > Anita in PA > > > > > 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 May 9, 2004 Report Share Posted May 9, 2004 thanks--I hope not also. We have been there about 5 times since we got married in 1990, All great trips--but now I seem to be having more problems. We will be going in July or August--never went then before. Those are my worst months as I cannot tolerate the heat and humidity. Janet Re: FOR BUG--MICHIGAN > That's an excellent idea about wearing the ID tag. I do the same. > In an emergency you could obviously end up in a 50 bed hospital ! > You just never know. If you haven't already...make sure you carry a > list in your purse of medications, your doctor info, disease info, > allergies and emergency contacts. I also carry a copy of my living > will and a copy of Doc Cohen's list of possible anesthesia > concerns. Always better to be over-prepared. As I mentioned, even > at U of M I've had mixed results in the ER. They just don't have > time to deal with us. They get a heck of a lot of trauma there. I > told my doc recently that unless I'm missing an appendage you won't > find me in the ER ! Only because I've waited over 6 hours before, > only to turn right back around with no treatment and exposure to all > those sick people. > > Best of luck and hope your trip is fantastic. I hope the ER won't > be on your list of tourist attractions. > > bug > > > > > 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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