Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 This is difficult to ask but here is the only place I know to get an answer. Husband has had a drastic turn and has been hospitalized for two weeks with total strength shutdown. He can't eat, sit, or stay awake beyond five minutes. My question is for those that have gone through the end of this disease...is this going to be it? He is now in a rehab facility and agreed to a temporary feeding tube for seven days but I want to encourage him to keep at it and he's beginning to believe his body is giving up. Has anyone had recovery from such a total shut down? His mind is sharp, he's all there is all ways but strength and the " experts " have no answers for us. Any guidance will be appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 Hi all! I introduced myself a while back, but have not been around for a while. I took my daughter to Boston last Monday to see Dr. Korson and he does believe she could have mito. She will see some doc down here in Atlanta and have a biopsy by Schoffner. This makes me very nervous and I have been prolonging it since Oct! She and I both will go back to Boston in 6 months. I have put myself on the back burner while I have been worrying about her, but I am in one of my " funks " as I call it, right now. Extreme fatigue, muscle weakness/achy, ha, not sleeping, etc. I was wondering if anyone knows of an adult doc in the Atlanta area that deals with or is familiar with mito? Thanks, Stormy in GA ~~It is better to be hated for who you are than to be loved for who you are not~~ difficult question This is difficult to ask but here is the only place I know to get an answer. Husband has had a drastic turn and has been hospitalized for two weeks with total strength shutdown. He can't eat, sit, or stay awake beyond five minutes. My question is for those that have gone through the end of this disease...is this going to be it? He is now in a rehab facility and agreed to a temporary feeding tube for seven days but I want to encourage him to keep at it and he's beginning to believe his body is giving up. Has anyone had recovery from such a total shut down? His mind is sharp, he's all there is all ways but strength and the " experts " have no answers for us. Any guidance will be appreciated. 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 March 19, 2006 Report Share Posted March 19, 2006 Shoffner in Atlanta is great. I belive he is seeing patients in addtion to doing the biopsies, but this can change from time to time so I would check with his office. Stormy wrote: >Hi all! >I introduced myself a while back, but have not been around for a while. >I took my daughter to Boston last Monday to see Dr. Korson and he does >believe she could have mito. She will see some doc down here in Atlanta >and have a biopsy by Schoffner. This makes me very nervous and I have >been prolonging it since Oct! She and I both will go back to Boston in >6 months. I have put myself on the back burner while I have been >worrying about her, but I am in one of my " funks " as I call it, right >now. Extreme fatigue, muscle weakness/achy, ha, not sleeping, etc. I >was wondering if anyone knows of an adult doc in the Atlanta area that >deals with or is familiar with mito? > >Thanks, >Stormy in GA > >~~It is better to be hated for who you are than to be loved for who you >are not~~ > > difficult question > >This is difficult to ask but here is the only place I know to get an >answer. Husband has had a drastic turn and has been hospitalized for >two weeks with total strength shutdown. He can't eat, sit, or stay >awake beyond five minutes. > >My question is for those that have gone through the end of this >disease...is this going to be it? He is now in a rehab facility and >agreed to a temporary feeding tube for seven days but I want to >encourage him to keep at it and he's beginning to believe his body is >giving up. Has anyone had recovery from such a total shut down? His >mind is sharp, he's all there is all ways but strength and the > " experts " have no answers for us. Any guidance will be appreciated. > > > > > > >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 March 19, 2006 Report Share Posted March 19, 2006 Stormy It is good to hear from you. I'm sorry to hear that your daughter may also have mito. I traveled to Atlanta to get my biopsy from Dr. Shoffner. It was done under a local and I left and went out to dinner. He was very good. I don't know of any other mito docs in your area. laurie > Hi all! > I introduced myself a while back, but have not been around for a while. > I took my daughter to Boston last Monday to see Dr. Korson and he does > believe she could have mito. She will see some doc down here in Atlanta > and have a biopsy by Schoffner. This makes me very nervous and I have > been prolonging it since Oct! She and I both will go back to Boston in > 6 months. I have put myself on the back burner while I have been > worrying about her, but I am in one of my " funks " as I call it, right > now. Extreme fatigue, muscle weakness/achy, ha, not sleeping, etc. I > was wondering if anyone knows of an adult doc in the Atlanta area that > deals with or is familiar with mito? > > Thanks, > Stormy in GA > > ~~It is better to be hated for who you are than to be loved for who you > are not~~ > > > difficult question > > This is difficult to ask but here is the only place I know to get an > answer. Husband has had a drastic turn and has been hospitalized for > two weeks with total strength shutdown. He can't eat, sit, or stay > awake beyond five minutes. > > My question is for those that have gone through the end of this > disease...is this going to be it? He is now in a rehab facility and > agreed to a temporary feeding tube for seven days but I want to > encourage him to keep at it and he's beginning to believe his body is > giving up. Has anyone had recovery from such a total shut down? His > mind is sharp, he's all there is all ways but strength and the > " experts " have no answers for us. Any guidance will be appreciated. > > > > > > > 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 March 19, 2006 Report Share Posted March 19, 2006 Dr. Shoffner in Atlanta diagnoses both adults and children. Stormy imstormy@...> wrote: Hi all! I introduced myself a while back, but have not been around for a while. I took my daughter to Boston last Monday to see Dr. Korson and he does believe she could have mito. She will see some doc down here in Atlanta and have a biopsy by Schoffner. This makes me very nervous and I have been prolonging it since Oct! She and I both will go back to Boston in 6 months. I have put myself on the back burner while I have been worrying about her, but I am in one of my " funks " as I call it, right now. Extreme fatigue, muscle weakness/achy, ha, not sleeping, etc. I was wondering if anyone knows of an adult doc in the Atlanta area that deals with or is familiar with mito? Thanks, Stormy in GA ~~It is better to be hated for who you are than to be loved for who you are not~~ difficult question This is difficult to ask but here is the only place I know to get an answer. Husband has had a drastic turn and has been hospitalized for two weeks with total strength shutdown. He can't eat, sit, or stay awake beyond five minutes. My question is for those that have gone through the end of this disease...is this going to be it? He is now in a rehab facility and agreed to a temporary feeding tube for seven days but I want to encourage him to keep at it and he's beginning to believe his body is giving up. Has anyone had recovery from such a total shut down? His mind is sharp, he's all there is all ways but strength and the " experts " have no answers for us. Any guidance will be appreciated. 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 March 19, 2006 Report Share Posted March 19, 2006 Yes, I know Schoffner diagnosis both, but I was hoping to find maybe an adult neurologist or even a primary care that was at least familiar with mito. I was just thinking that it would be nice to have some different exams and maybe tests done so when I do see Korson in the fall I will be one step ahead. Thanks! Stormy in GA ~~It is better to be hated for who you are than to be loved for who you are not~~ difficult question This is difficult to ask but here is the only place I know to get an answer. Husband has had a drastic turn and has been hospitalized for two weeks with total strength shutdown. He can't eat, sit, or stay awake beyond five minutes. My question is for those that have gone through the end of this disease...is this going to be it? He is now in a rehab facility and agreed to a temporary feeding tube for seven days but I want to encourage him to keep at it and he's beginning to believe his body is giving up. Has anyone had recovery from such a total shut down? His mind is sharp, he's all there is all ways but strength and the " experts " have no answers for us. Any guidance will be appreciated. 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 March 19, 2006 Report Share Posted March 19, 2006 When I first became overtly symptomatic, I was out of town and went into a complete, rapid motor shutdown. It was a very bizarre presentation, and I think I had the flu or some other infection that precipitated the event. I couldn't even roll over in bed, and felt the worst I had ever felt in my life. I gradually improved somewhat, and was able to get home in a wheelchair. Once home, I was mostly flat on my back for 3 weeks. I think it was a tincture of time- rest, eating as well as I possibly could-that finally got me through . I returned to work and gradually improved for several months, only to have a must less acute and less severe relapse which never has really gone away. As has been said many times on this board, every case is so different. How one person responds in a certain situation really doesn't necessarily have much predictive value for someone else. I did want to share my story with you because, from what I've gleaned, (to use your terminology) " drastic " changes are atypical. Also, I wanted you to know that, in my case, a decent recovery was possible. In a nutshell, I guess what I'm trying to say is, don't give up hope. JT difficult question > This is difficult to ask but here is the only place I know to get an > answer. Husband has had a drastic turn and has been hospitalized for > two weeks with total strength shutdown. He can't eat, sit, or stay > awake beyond five minutes. > > My question is for those that have gone through the end of this > disease...is this going to be it? He is now in a rehab facility and > agreed to a temporary feeding tube for seven days but I want to > encourage him to keep at it and he's beginning to believe his body is > giving up. Has anyone had recovery from such a total shut down? His > mind is sharp, he's all there is all ways but strength and the > " experts " have no answers for us. Any guidance will be appreciated. > > > > > > > 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 March 19, 2006 Report Share Posted March 19, 2006 Dr. Shoffner does differential diagnosis of other conditions, that is other than mitochondrial disease. For example, he was looking for different neuromuscular diseases in my case, as well as genetic conditions like familial hemiplegic migraine and autoimmune conditions and MS. I had my fresh muscle biopsy when I was pregnant, and a pediatric neurologist did the surgery. I did find that he was very sensitive to my pain level, and the whole thing went pretty well. Also, my MDA doctor recommended additional tests, and Dr. Shoffner recommended some additional tests at the time of the fresh muscle biopsy, such that they gave me local anesthesia at my blood draw site because they had so many vials to take LOL... Take care, RH Hi all! > I introduced myself a while back, but have not been around for a while. > I took my daughter to Boston last Monday to see Dr. Korson and he does > believe she could have mito. She will see some doc down here in Atlanta > and have a biopsy by Schoffner. This makes me very nervous and I have > been prolonging it since Oct! She and I both will go back to Boston in > 6 months. I have put myself on the back burner while I have been > worrying about her, but I am in one of my " funks " as I call it, right > now. Extreme fatigue, muscle weakness/achy, ha, not sleeping, etc. I > was wondering if anyone knows of an adult doc in the Atlanta area that > deals with or is familiar with mito? > > Thanks, > Stormy in GA > > ~~It is better to be hated for who you are than to be loved for who you > are not~~ > > difficult question > > This is difficult to ask but here is the only place I know to get an > answer. Husband has had a drastic turn and has been hospitalized for > two weeks with total strength shutdown. He can't eat, sit, or stay > awake beyond five minutes. > > My question is for those that have gone through the end of this > disease...is this going to be it? He is now in a rehab facility and > agreed to a temporary feeding tube for seven days but I want to > encourage him to keep at it and he's beginning to believe his body is > giving up. Has anyone had recovery from such a total shut down? His > mind is sharp, he's all there is all ways but strength and the > " experts " have no answers for us. Any guidance will be appreciated. > > > > > > > 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 March 19, 2006 Report Share Posted March 19, 2006 HI Stormy, I see that you will be going to Boston soon to see Dr. Korson. You are looking for a PCP or a Neurologist who knows about Mito. I do not live in the Atlanta area so I can recommend a doctor for you. But I did want to mention that if you have a PCP that you see now, he/she would be alright to continue with. I don't know of many people who have PCP's who actually knew about Mito beforehand. If your PCP is willing to learn and take direction from your other Specialists it will be fine to continue with them. Also have you contacted your local MDA Clinic in your area? Most MDA Clinics have Neurologists who take care of the Mito patients. I think the most important thing is to make sure that ALL of your doctors are willing to work together. Mito patients have many different sub-specialists that help to maintain their health, and it is important that they all get along and can work together without some of them getting a BIG head and thinking they know it ALL. When is your appt. with Dr. Korson? I also see Dr. Korson and am going up to Boston to see him in the next few months. If we are there at the same time we can meet and get to know each other. I would like that. Hugs, Ann-Marie difficult question This is difficult to ask but here is the only place I know to get an answer. Husband has had a drastic turn and has been hospitalized for two weeks with total strength shutdown. He can't eat, sit, or stay awake beyond five minutes. My question is for those that have gone through the end of this disease...is this going to be it? He is now in a rehab facility and agreed to a temporary feeding tube for seven days but I want to encourage him to keep at it and he's beginning to believe his body is giving up. Has anyone had recovery from such a total shut down? His mind is sharp, he's all there is all ways but strength and the " experts " have no answers for us. Any guidance will be appreciated. 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 March 20, 2006 Report Share Posted March 20, 2006 > I have no answer for you, but my heart aches for your sadness.My husband Dave has been on hospice since Nov.2005 and he dies a little everyday. the only thing he has left is strength. the muscle coordination is terrible and atrophy to the brain, feeding tube when he asks for food he chokes on it as he eats it.he doesn't do much anymore except sleep or sit in his recliner and watch TV. I wish there I had an answer to your questions but I don't just know I'm thinking of your situation and you too. Kim (Roanoke VA) > > Date: 2006/03/19 Sun PM 01:31:56 EST > To: > Subject: difficult question > > Quote Link to comment Share on other sites More sharing options...
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