Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 I have MELAS I am also diabetic and was deafened. About 20% of those with MELAS suffer from hearing loss. Dr. Shoffner of Atlanta diagnosed me and set up a " cocktail " of vitamins and things to take to help with the MELAS. How are your brother's sugars as mito diseases can play havoc with the diabetes and usually don't follow the " normal " path of the disease. Dr. Shoffner is at Emory. There is a doctor that specializes in gastro/mito problems his name is Dr. DeMauro at Columbia Presbyterian in New York City he is a very nice man. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 I have MELAS I am also diabetic and was deafened. About 20% of those with MELAS suffer from hearing loss. Dr. Shoffner of Atlanta diagnosed me and set up a " cocktail " of vitamins and things to take to help with the MELAS. How are your brother's sugars as mito diseases can play havoc with the diabetes and usually don't follow the " normal " path of the disease. Dr. Shoffner is at Emory. There is a doctor that specializes in gastro/mito problems his name is Dr. DeMauro at Columbia Presbyterian in New York City he is a very nice man. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 If Atlanta isn't too far, there's an excellent doctor there, Dr. Shoffner. They do testing there as well. Here is the website for the lab and doctors' practice: www.horizonmedicine.com Their contact info is there, same place to call for doctor's appointments and testing. Not a MDA clinic, so does cost some $$. There is a local MDA clinic at Palmetto Richland: http://www.palmettohealth.org/facilities/richland/ MDA Clinic: Columbia Palmetto Richland Mem. Hosp. MDA Support Group: Columbia General Monthly But unfortunately not all MDA clinics know a lot about mitochondrial disease. Take care, RH > > > Hi - I've just found out about your group. My brother is 51 > yrs old and was diagnosed about 4 yrs ago with MELAS. That was when > he had a severe heart failure problem. He recently had another heart > failure problem and his cardiologist feels like there is nothing else > he can for him. He became diabetic and started losing hearing in his > early 20s and had WPW then - has gone downhill slowly but surely > since then. We're now trying to find about Drs affiliated with MDA > since he is on Medicare and hope to get him to a specialist who has > treated adults with MELAS. Recently he has a new gastro problem that > I'm wondering could be a part of the mito problem. Has this happened > to any of you? And have you had a wonderful, experienced Dr? We > live in Columbia SC but are willing to travel for help. Any thoughts > you have would be appreciated. > Thank You! > Annie Antley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 If Atlanta isn't too far, there's an excellent doctor there, Dr. Shoffner. They do testing there as well. Here is the website for the lab and doctors' practice: www.horizonmedicine.com Their contact info is there, same place to call for doctor's appointments and testing. Not a MDA clinic, so does cost some $$. There is a local MDA clinic at Palmetto Richland: http://www.palmettohealth.org/facilities/richland/ MDA Clinic: Columbia Palmetto Richland Mem. Hosp. MDA Support Group: Columbia General Monthly But unfortunately not all MDA clinics know a lot about mitochondrial disease. Take care, RH > > > Hi - I've just found out about your group. My brother is 51 > yrs old and was diagnosed about 4 yrs ago with MELAS. That was when > he had a severe heart failure problem. He recently had another heart > failure problem and his cardiologist feels like there is nothing else > he can for him. He became diabetic and started losing hearing in his > early 20s and had WPW then - has gone downhill slowly but surely > since then. We're now trying to find about Drs affiliated with MDA > since he is on Medicare and hope to get him to a specialist who has > treated adults with MELAS. Recently he has a new gastro problem that > I'm wondering could be a part of the mito problem. Has this happened > to any of you? And have you had a wonderful, experienced Dr? We > live in Columbia SC but are willing to travel for help. Any thoughts > you have would be appreciated. > Thank You! > Annie Antley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 If Atlanta isn't too far, there's an excellent doctor there, Dr. Shoffner. They do testing there as well. Here is the website for the lab and doctors' practice: www.horizonmedicine.com Their contact info is there, same place to call for doctor's appointments and testing. Not a MDA clinic, so does cost some $$. There is a local MDA clinic at Palmetto Richland: http://www.palmettohealth.org/facilities/richland/ MDA Clinic: Columbia Palmetto Richland Mem. Hosp. MDA Support Group: Columbia General Monthly But unfortunately not all MDA clinics know a lot about mitochondrial disease. Take care, RH > > > Hi - I've just found out about your group. My brother is 51 > yrs old and was diagnosed about 4 yrs ago with MELAS. That was when > he had a severe heart failure problem. He recently had another heart > failure problem and his cardiologist feels like there is nothing else > he can for him. He became diabetic and started losing hearing in his > early 20s and had WPW then - has gone downhill slowly but surely > since then. We're now trying to find about Drs affiliated with MDA > since he is on Medicare and hope to get him to a specialist who has > treated adults with MELAS. Recently he has a new gastro problem that > I'm wondering could be a part of the mito problem. Has this happened > to any of you? And have you had a wonderful, experienced Dr? We > live in Columbia SC but are willing to travel for help. Any thoughts > you have would be appreciated. > Thank You! > Annie Antley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 Annie Welcome to the group. I am glad you found us. I'm sorry your brother has MELAS and hope you can find an MDA doc with mito knowledge. I am not familiar with your area, so can't help you there. What kind of GI problems is your brother having? GI problems are common in mito. Is he taking CoQ10? This can really help with the heart problems as well as other mito symptoms in many people. laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 Thank you very much. I left a message for the coordinator at clinic this morning (the local one and will look at Horizon as well. Thanks again Annie Re: About my brother If Atlanta isn't too far, there's an excellent doctor there, Dr. Shoffner. They do testing there as well. Here is the website for the lab and doctors' practice: www.horizonmedicine.com Their contact info is there, same place to call for doctor's appointments and testing. Not a MDA clinic, so does cost some $$. There is a local MDA clinic at Palmetto Richland: http://www.palmettohealth.org/facilities/richland/ MDA Clinic: Columbia Palmetto Richland Mem. Hosp. MDA Support Group: Columbia General Monthly But unfortunately not all MDA clinics know a lot about mitochondrial disease. Take care, RH > > > Hi - I've just found out about your group. My brother is 51 > yrs old and was diagnosed about 4 yrs ago with MELAS. That was when > he had a severe heart failure problem. He recently had another heart > failure problem and his cardiologist feels like there is nothing else > he can for him. He became diabetic and started losing hearing in his > early 20s and had WPW then - has gone downhill slowly but surely > since then. We're now trying to find about Drs affiliated with MDA > since he is on Medicare and hope to get him to a specialist who has > treated adults with MELAS. Recently he has a new gastro problem that > I'm wondering could be a part of the mito problem. Has this happened > to any of you? And have you had a wonderful, experienced Dr? We > live in Columbia SC but are willing to travel for help. Any thoughts > you have would be appreciated. > Thank You! > Annie Antley 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 15, 2005 Report Share Posted March 15, 2005 Sugar is fairly stable. Potassium in blood is a problem - too high. He's had a cochlear implant so communication is better. And Atlanta is 'doable' - looking into that now Thanks very much! Re: About my brother I have MELAS I am also diabetic and was deafened. About 20% of those with MELAS suffer from hearing loss. Dr. Shoffner of Atlanta diagnosed me and set up a " cocktail " of vitamins and things to take to help with the MELAS. How are your brother's sugars as mito diseases can play havoc with the diabetes and usually don't follow the " normal " path of the disease. Dr. Shoffner is at Emory. There is a doctor that specializes in gastro/mito problems his name is Dr. DeMauro at Columbia Presbyterian in New York City he is a very nice man. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 Sugar is fairly stable. Potassium in blood is a problem - too high. He's had a cochlear implant so communication is better. And Atlanta is 'doable' - looking into that now Thanks very much! Re: About my brother I have MELAS I am also diabetic and was deafened. About 20% of those with MELAS suffer from hearing loss. Dr. Shoffner of Atlanta diagnosed me and set up a " cocktail " of vitamins and things to take to help with the MELAS. How are your brother's sugars as mito diseases can play havoc with the diabetes and usually don't follow the " normal " path of the disease. Dr. Shoffner is at Emory. There is a doctor that specializes in gastro/mito problems his name is Dr. DeMauro at Columbia Presbyterian in New York City he is a very nice man. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 GI problems can be severe diarrhea followed by severe constipation. And/or cramping like diarrhea is on the way but nothing happens - many times a day... And he is on the Q10 Re: About my brother Annie Welcome to the group. I am glad you found us. I'm sorry your brother has MELAS and hope you can find an MDA doc with mito knowledge. I am not familiar with your area, so can't help you there. What kind of GI problems is your brother having? GI problems are common in mito. Is he taking CoQ10? This can really help with the heart problems as well as other mito symptoms in many people. laurie 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 15, 2005 Report Share Posted March 15, 2005 GI problems can be severe diarrhea followed by severe constipation. And/or cramping like diarrhea is on the way but nothing happens - many times a day... And he is on the Q10 Re: About my brother Annie Welcome to the group. I am glad you found us. I'm sorry your brother has MELAS and hope you can find an MDA doc with mito knowledge. I am not familiar with your area, so can't help you there. What kind of GI problems is your brother having? GI problems are common in mito. Is he taking CoQ10? This can really help with the heart problems as well as other mito symptoms in many people. laurie 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 15, 2005 Report Share Posted March 15, 2005 How much CQ10 is he on? Sometimes a higher dose will help things. Get a docs OK first though. Antley, Annie wrote: >GI problems can be severe diarrhea followed by severe constipation. >And/or cramping like diarrhea is on the way but nothing happens - many >times a day... >And he is on the Q10 > > Re: About my brother > >Annie > >Welcome to the group. I am glad you found us. > >I'm sorry your brother has MELAS and hope you can find an MDA doc with >mito knowledge. I am not familiar with your area, so can't help you >there. > >What kind of GI problems is your brother having? GI problems are common >in mito. > >Is he taking CoQ10? This can really help with the heart problems as >well as other mito symptoms in many people. > >laurie > > >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 15, 2005 Report Share Posted March 15, 2005 How much CQ10 is he on? Sometimes a higher dose will help things. Get a docs OK first though. Antley, Annie wrote: >GI problems can be severe diarrhea followed by severe constipation. >And/or cramping like diarrhea is on the way but nothing happens - many >times a day... >And he is on the Q10 > > Re: About my brother > >Annie > >Welcome to the group. I am glad you found us. > >I'm sorry your brother has MELAS and hope you can find an MDA doc with >mito knowledge. I am not familiar with your area, so can't help you >there. > >What kind of GI problems is your brother having? GI problems are common >in mito. > >Is he taking CoQ10? This can really help with the heart problems as >well as other mito symptoms in many people. > >laurie > > >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 15, 2005 Report Share Posted March 15, 2005 Have they looked at this possibility? http://www.vgl.ucdavis.edu/~lvmillon/hypp/hypp_facts.html This was a differential diagnosis for me, I think they've ruled it out in my case, but high potassium might indicate this type of condition (hyperkalemic periodic paralysis). Take care, RH > > Sugar is fairly stable. Potassium in blood is a problem - too high. > He's had a cochlear implant so communication is better. And Atlanta is > 'doable' - looking into that now > Thanks very much! > > Re: About my brother > > I have MELAS I am also diabetic and was deafened. About 20% of those > with > MELAS suffer from hearing loss. Dr. Shoffner of Atlanta diagnosed me > and set up > a " cocktail " of vitamins and things to take to help with the MELAS. How > are > your brother's sugars as mito diseases can play havoc with the diabetes > and > usually don't follow the " normal " path of the disease. Dr. Shoffner is > at Emory. > There is a doctor that specializes in gastro/mito problems his name is > Dr. > DeMauro at Columbia Presbyterian in New York City he is a very > nice man. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 Boy, the gremlins are really in my computer lately! That's a veterinary site, here's a human one http://www.emedicine.com/neuro/topic308.htm If anyone sees my brain, let it know that I miss it! Take care, RH > > > > Sugar is fairly stable. Potassium in blood is a problem - too high. > > He's had a cochlear implant so communication is better. And > Atlanta is > > 'doable' - looking into that now > > Thanks very much! > > > > Re: About my brother > > > > I have MELAS I am also diabetic and was deafened. About 20% of > those > > with > > MELAS suffer from hearing loss. Dr. Shoffner of Atlanta diagnosed > me > > and set up > > a " cocktail " of vitamins and things to take to help with the > MELAS. How > > are > > your brother's sugars as mito diseases can play havoc with the > diabetes > > and > > usually don't follow the " normal " path of the disease. Dr. Shoffner > is > > at Emory. > > There is a doctor that specializes in gastro/mito problems his name > is > > Dr. > > DeMauro at Columbia Presbyterian in New York City he is a very > > nice man. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 Welcome, My family has melas. My mother and sister had the seizures and I have " evidence " of seizures. Myself (43) and my son (12) have mild symptoms, are slightly overweight. I have diabetes that blood sugar goes up with exercise but an insulin pump has helped. I also have slight hearing loss. My son had very bad headaches 5 years ago in first grade and no cause was found. They eventually went away. About 3 years ago he started having severe constipation problems that did not respond to any laxative or diet change. What helped him was to start taking Carniqgel which is a combination of Carnitine and Qgel which is a form of CoQ10 that is supposed to be more effective. We live in Wisconsin and the doctor who diagnosed us is near Milwaukee. He is not very good at paperwork followup though is excellent at remembering details about you. Janet Sample About my brother Hi - I've just found out about your group. My brother is 51 yrs old and was diagnosed about 4 yrs ago with MELAS. That was when he had a severe heart failure problem. He recently had another heart failure problem and his cardiologist feels like there is nothing else he can for him. He became diabetic and started losing hearing in his early 20s and had WPW then - has gone downhill slowly but surely since then. We're now trying to find about Drs affiliated with MDA since he is on Medicare and hope to get him to a specialist who has treated adults with MELAS. Recently he has a new gastro problem that I'm wondering could be a part of the mito problem. Has this happened to any of you? And have you had a wonderful, experienced Dr? We live in Columbia SC but are willing to travel for help. Any thoughts you have would be appreciated. Thank You! Annie Antley 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 15, 2005 Report Share Posted March 15, 2005 I believe many on CoQ10 say they have to have a rather large dosage for them to notice a difference. Janet Sample Re: About my brother Annie Welcome to the group. I am glad you found us. I'm sorry your brother has MELAS and hope you can find an MDA doc with mito knowledge. I am not familiar with your area, so can't help you there. What kind of GI problems is your brother having? GI problems are common in mito. Is he taking CoQ10? This can really help with the heart problems as well as other mito symptoms in many people. laurie 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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