Guest guest Posted November 26, 2004 Report Share Posted November 26, 2004 Hello Everyone, My name is and I have just joined this discussion fourm. My boyfriend has Mitochondrial neurogastrointestinal encephalopathy (MNGIE). He is in his mid 20's and has had 2 surgeries and one long term hospitalization in the last 3 years. Lately he has stopped eating and lost a lot of weight. He has just headed back to see his specialist in London Ontario where they are admitting him to hospital to be put on TPN and antibiotics. I have joined this group to gain information, as much as I can. I feel lost and like there is nothing I can do to help him. Just sit and watch him suffer.....again. Any information anyone has about MNGIE is appreciate, any websites, doctors, treatment ideas, anything. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2004 Report Share Posted November 27, 2004 In a message dated 11/26/2004 10:40:43 AM Eastern Standard Time, jenniferawilliamson@... writes: He is in his mid 20's and has had 2 surgeries and one long term hospitalization in the last 3 years. Lately he has stopped eating and lost a lot of weight. He has just headed back to see his specialist in London Ontario where they are admitting him to hospital to be put on TPN and antibiotics. Hi , Welcome to the group. I am 27 yrs old and have had symptoms of mito since the age of 14, starting with GI dysmotility. I don't have MNGIE, but I have been on TPN for the past 10 yrs. You sound like a wonderful girlfriend to be researching and finding any info. you can to help him. I have been dating my fiance for 6 yrs and he has been through a lot with me. It makes a world of difference to have someone like you there during the hard times. Your boyfriend is a lucky guy! Have you checked out the UMDF website yet? _www.umdf.org_ (http://www.umdf.org) This is a great website to get general mito info. from. Dr Hirano at Columbia-Presbyterian in NYC has an interest in MNGIE. Here's a link to his information: _http://cumc.columbia.edu/dept/neurology/ni/faculty/hirano.htm_ (http://cumc.columbia.edu/dept/neurology/ni/faculty/hirano.htm) Also, the MDA website has some general info. about mito, as well. _www.mdausa.org_ (http://www.mdausa.org) Feel free to ask any questions as they come up. This is a great group. Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2004 Report Share Posted November 27, 2004 , Welcome to Mitoldies. Things are a little quiet here I suspect because of the Thanksgiving holiday in the states. I don't have MNGIE, but there are many things in general you can learn here about mito and its many complex twists and turns. Please feel free to ask questions of us. We can give you our own personal experiences that may help you and your boyfriend to better understand this complex disease and give you both support. jenniferw2005 wrote: >Hello Everyone, >My name is and I have just joined this discussion fourm. My >boyfriend has Mitochondrial neurogastrointestinal encephalopathy >(MNGIE). He is in his mid 20's and has had 2 surgeries and one long >term hospitalization in the last 3 years. Lately he has stopped >eating and lost a lot of weight. He has just headed back to see his >specialist in London Ontario where they are admitting him to hospital >to be put on TPN and antibiotics. >I have joined this group to gain information, as much as I can. I >feel lost and like there is nothing I can do to help him. Just sit >and watch him suffer.....again. Any information anyone has about >MNGIE is appreciate, any websites, doctors, treatment ideas, anything. >Thanks, > > > > > > > >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 November 27, 2004 Report Share Posted November 27, 2004 , Welcome to Mitoldies. Things are a little quiet here I suspect because of the Thanksgiving holiday in the states. I don't have MNGIE, but there are many things in general you can learn here about mito and its many complex twists and turns. Please feel free to ask questions of us. We can give you our own personal experiences that may help you and your boyfriend to better understand this complex disease and give you both support. jenniferw2005 wrote: >Hello Everyone, >My name is and I have just joined this discussion fourm. My >boyfriend has Mitochondrial neurogastrointestinal encephalopathy >(MNGIE). He is in his mid 20's and has had 2 surgeries and one long >term hospitalization in the last 3 years. Lately he has stopped >eating and lost a lot of weight. He has just headed back to see his >specialist in London Ontario where they are admitting him to hospital >to be put on TPN and antibiotics. >I have joined this group to gain information, as much as I can. I >feel lost and like there is nothing I can do to help him. Just sit >and watch him suffer.....again. Any information anyone has about >MNGIE is appreciate, any websites, doctors, treatment ideas, anything. >Thanks, > > > > > > > >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 November 27, 2004 Report Share Posted November 27, 2004 , Hi! Welcome to the group. This is a group filled with caring, supportive and knowledgeable people. I am 28 years old but have had symptoms of mito since 14. I was diagnosed at 18. I do not have MNGIE or have the need for TPN. This summer I did end up getting a G/J tube due to having trouble with fluid intake and recently the doctors and I have been discussing nutrition. I also use walking aides and a wheelchair due to weakness/endurance issues. I am glad your boyfriend has you standing by him. There are many caretakers in this group as well. The UMDF web site probably has some helpful information. Feel free to ask any questions here. Smiles, a In a message dated 11/26/2004 10:40:43 AM Eastern Standard Time, jenniferawilliamson@... writes: He is in his mid 20's and has had 2 surgeries and one long term hospitalization in the last 3 years. Lately he has stopped eating and lost a lot of weight. He has just headed back to see his specialist in London Ontario where they are admitting him to hospital to be put on TPN and antibiotics. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2004 Report Share Posted November 27, 2004 Hi , Welcome to the group. This group is filled with great people, who care and go out of their way to find answers, and we are always here when you need us. Seems like right now everyone is recovering from the Thanksgiving Holiday. I am sure you will be getting alot of responses in a few days once everyone has rested up or has come back home from being with family. I am sorry to hear about your boyfriend having MNGIE. I also do not have MNGIE, but do have mitochondrial encephalopathy. They think it actually might be MELAS and I am going back for another muscle biopsy in the Spring. My first one was 10 yrs. ago, and alot of new research has come to the forefront since then. And like a, I am going to have a g-tube put in very shortly. I have lost over 25 lbs. in about 7 to 8 months. Right now I am stable at 80lbs. and am 44 yrs. old. Malisa sent you alot of important and valuable information in her email to you, so I think you will have enough to read for now. You are a wonderful and caring person to stick close by your boyfriend. It isn't easy being a caregiver(although I am not one) and watching your loved one suffer from this disease, but please know that we are all here for you, anytime you need to vent, cry, share a happy moment, etc... I am so glad you found us. Just start asking us questions and we will answer them to the best of our ability. Hugs, Ann-Marie Newbie Saying Hello Hello Everyone, My name is and I have just joined this discussion fourm. My boyfriend has Mitochondrial neurogastrointestinal encephalopathy (MNGIE). He is in his mid 20's and has had 2 surgeries and one long term hospitalization in the last 3 years. Lately he has stopped eating and lost a lot of weight. He has just headed back to see his specialist in London Ontario where they are admitting him to hospital to be put on TPN and antibiotics. I have joined this group to gain information, as much as I can. I feel lost and like there is nothing I can do to help him. Just sit and watch him suffer.....again. Any information anyone has about MNGIE is appreciate, any websites, doctors, treatment ideas, anything. Thanks, 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 November 27, 2004 Report Share Posted November 27, 2004 Hi , I just wanted to welcome you to the group. This is a wonderful group full of supportive people, so feel free to ask questions and we will answer them the best that we can. I have a form of mito called Primary Systemic Carnitine Deficiency, but I don't have MNGIE. I am on a vent, have a central line for meds, and use a wheelchair. You sound like a wonderful girlfriend and I am sure your boyfriend is glad to have you! Welcome again! Keep Smiling, Nikki > > Hello Everyone, > My name is and I have just joined this discussion fourm. My > boyfriend has Mitochondrial neurogastrointestinal encephalopathy > (MNGIE). He is in his mid 20's and has had 2 surgeries and one long > term hospitalization in the last 3 years. Lately he has stopped > eating and lost a lot of weight. He has just headed back to see his > specialist in London Ontario where they are admitting him to hospital > to be put on TPN and antibiotics. > I have joined this group to gain information, as much as I can. I > feel lost and like there is nothing I can do to help him. Just sit > and watch him suffer.....again. Any information anyone has about > MNGIE is appreciate, any websites, doctors, treatment ideas, anything. > Thanks, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2004 Report Share Posted November 28, 2004 Welcome to the group. I am sorry that your boyfriend is dealing with mito and therefore you are. We are here for you to lean on. laurie > > Reply-To: > Date: Fri, 26 Nov 2004 15:37:34 -0000 > To: > Subject: Newbie Saying Hello > > > Hello Everyone, > My name is and I have just joined this discussion fourm. My > boyfriend has Mitochondrial neurogastrointestinal encephalopathy > (MNGIE). He is in his mid 20's and has had 2 surgeries and one long > term hospitalization in the last 3 years. Lately he has stopped > eating and lost a lot of weight. He has just headed back to see his > specialist in London Ontario where they are admitting him to hospital > to be put on TPN and antibiotics. > I have joined this group to gain information, as much as I can. I > feel lost and like there is nothing I can do to help him. Just sit > and watch him suffer.....again. Any information anyone has about > MNGIE is appreciate, any websites, doctors, treatment ideas, anything. > Thanks, > > > > > > > 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 November 28, 2004 Report Share Posted November 28, 2004 Hi Nikki, Sorry to butt in here...I was just surprised to see someone else with Primary Systemic Carnitine Deficiency. That's what I have as well, and I never knew another (living) person who had that diagnosis. Theresa > > > > Hello Everyone, > > My name is and I have just joined this discussion fourm. > My > > boyfriend has Mitochondrial neurogastrointestinal encephalopathy > > (MNGIE). He is in his mid 20's and has had 2 surgeries and one > long > > term hospitalization in the last 3 years. Lately he has stopped > > eating and lost a lot of weight. He has just headed back to see > his > > specialist in London Ontario where they are admitting him to > hospital > > to be put on TPN and antibiotics. > > I have joined this group to gain information, as much as I can. I > > feel lost and like there is nothing I can do to help him. Just sit > > and watch him suffer.....again. Any information anyone has about > > MNGIE is appreciate, any websites, doctors, treatment ideas, > anything. > > Thanks, > > Quote Link to comment Share on other sites More sharing options...
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