Guest guest Posted July 14, 2004 Report Share Posted July 14, 2004 My husband was recently released from the hospital, he had several seizures. They were confused for days as to what was going on. He has what they describe as a persistently elevated lactate level. He has significant hearing loss, hypertrophic cardiomyopathy, diabetes. He's very short, and very thin, but eats like crazy. He's lost two siblings, his living siblings and his mothers extended side of the family has many of the same disorders. Its been a battle with his health for years now. It will take 4 weeks to get the DNA testing back, but they are telling us now that its a classic case of mitochondrial disorder. I'm trying to learn more, but what I'm reading doesn't sound real promising. They have him taking coenzyme Q10 and carnitine, along with his other meds. Do people with several symptoms, get better taking those meds? I know nothing about this condition. Can anyone tell me a good website to learn more about this, any help would be appreciated. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2004 Report Share Posted July 14, 2004 jest Welcome to the group. A few people improve, but most others progress (some slow, some fast). I am 62 and looking back had symptoms as a child, but very mild. I have used a scooter or wheelchair for 12 years, but am still able to walk at home. Not walking out side the home (almost all the time), along with the supplements have allowed me to continue to work (one more year only). I do things around the house, but only on days I don't work and I am still slow, having to sit to do many things and rest. I feel I still have a quality life. I live alone and can get places and do things. I have developed some problems with various body systems, but they remain minor. Children tend to have a more aggressive form or the disease rather than those with adult onset. Some good websites are which is the United Mitochondrial Disease Foundation. Go to the library section for the articles. Mito is one of the diseases covered under Muscular Dystrophy Association, so they have information on their site Ask questions and we will try to answer the best we can. We can only speak from our own experiences, not as doctors. I hope you can get the information and support you desire. This has got to be a very scary time for you. laurie > From: jest2smile@... > Reply-To: > Date: Wed, 14 Jul 2004 10:58:43 EDT > To: > Subject: Husbands health. > > My husband was recently released from the hospital, he had several seizures. > They were confused for days as to what was going on. He has what they > describe as a persistently elevated lactate level. He has significant hearing > loss, > hypertrophic cardiomyopathy, diabetes. He's very short, and very thin, but > eats like crazy. He's lost two siblings, his living siblings and his mothers > extended side of the family has many of the same disorders. Its been a battle > with his health for years now. It will take 4 weeks to get the DNA testing > back, but they are telling us now that its a classic case of mitochondrial > disorder. I'm trying to learn more, but what I'm reading doesn't sound real > promising. They have him taking coenzyme Q10 and carnitine, along with his > other > meds. Do people with several symptoms, get better taking those meds? I > know > nothing about this condition. Can anyone tell me a good website to learn > more about this, any help would be appreciated. Thanks. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2004 Report Share Posted July 14, 2004 An excellent website is UMDF.org. Shelby > My husband was recently released from the hospital, he had several > seizures. > They were confused for days as to what was going on. He has what they > describe as a persistently elevated lactate level. He has > significant hearing loss, > hypertrophic cardiomyopathy, diabetes. He's very short, and very > thin, but > eats like crazy. He's lost two siblings, his living siblings and his > mothers > extended side of the family has many of the same disorders. Its been > a battle > with his health for years now. It will take 4 weeks to get the DNA > testing > back, but they are telling us now that its a classic case of > mitochondrial > disorder. I'm trying to learn more, but what I'm reading doesn't > sound real > promising. They have him taking coenzyme Q10 and carnitine, along > with his other > meds. Do people with several symptoms, get better taking those > meds? I know > nothing about this condition. Can anyone tell me a good website to > learn > more about this, any help would be appreciated. Thanks. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2004 Report Share Posted July 14, 2004 Jest, welcome to the group. Glad you found us. I am sorry to hear that your husband may have a mitochondrial disease. Some people do very well on the CoQ10, Carnitor and others, while some can't take the CoQ10 or they can't take the Carnitor. It will vary in different people. I also have persistent elevated lactate acids levels, my last one was 22.and I have had SLE's. I am also very thin, and short. I used to eat like crazy but now most days just the thought of food, or the smell of food or someone naming different kinds of food makes me nausea. Which has resulted in a severe weight loss in the last 8 months. I am 44 yrs old and weigh a whopping 80lbs. Of course it doesn't help when you are in a crash for the last 8 months and have been sleeping for almost 18-20 hours a day, eating only 1 meal if that. Someone already posted a good website for you. Another way to learn more about this disease is to just start asking us questions and we will try and answer them. If we don't know, we will tell you. Just remember we aren't doctors, what we say is our own personal experience. What did your husband's two siblings die of? and how old were they? I am glad you found us and hope you feel comfortable here. It is a great group and you will learn alot. Hugs, Ann-Marie Husbands health. My husband was recently released from the hospital, he had several seizures. They were confused for days as to what was going on. He has what they describe as a persistently elevated lactate level. He has significant hearing loss, hypertrophic cardiomyopathy, diabetes. He's very short, and very thin, but eats like crazy. He's lost two siblings, his living siblings and his mothers extended side of the family has many of the same disorders. Its been a battle with his health for years now. It will take 4 weeks to get the DNA testing back, but they are telling us now that its a classic case of mitochondrial disorder. I'm trying to learn more, but what I'm reading doesn't sound real promising. They have him taking coenzyme Q10 and carnitine, along with his other meds. Do people with several symptoms, get better taking those meds? I know nothing about this condition. Can anyone tell me a good website to learn more about this, any help would be appreciated. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2004 Report Share Posted July 14, 2004 Ann-Marie I have found when I am in a crash and sleeping that much that I need to set the alarm to get up to eat and take meds. Eating makes a difference in how long my crash lasts. Even if it is a can of Boost or something similar. laurie > > Reply-To: > Date: Wed, 14 Jul 2004 19:04:43 -0400 > To: > > Subject: Re: Husbands health. > > Jest, > > welcome to the group. Glad you found us. I am sorry to hear that your husband > may have a mitochondrial disease. > > Some people do very well on the CoQ10, Carnitor and others, while some can't > take the CoQ10 or they can't take the Carnitor. It will vary in different > people. > > I also have persistent elevated lactate acids levels, my last one was 22.and I > have had SLE's. I am also very thin, and short. I used to eat like crazy but > now most days just the thought of food, or the smell of food or someone naming > different kinds of food makes me nausea. Which has resulted in a severe weight > loss in the last 8 months. I am 44 yrs old and weigh a whopping 80lbs. Of > course it doesn't help when you are in a crash for the last 8 months and have > been sleeping for almost 18-20 hours a day, eating only 1 meal if that. > > Someone already posted a good website for you. Another way to learn more about > this disease is to just start asking us questions and we will try and answer > them. If we don't know, we will tell you. Just remember we aren't doctors, > what we say is our own personal experience. > > What did your husband's two siblings die of? and how old were they? > > I am glad you found us and hope you feel comfortable here. It is a great group > and you will learn alot. > > Hugs, > Ann-Marie > > > Husbands health. > > > My husband was recently released from the hospital, he had several seizures. > They were confused for days as to what was going on. He has what they > describe as a persistently elevated lactate level. He has significant hearing > loss, > hypertrophic cardiomyopathy, diabetes. He's very short, and very thin, but > eats like crazy. He's lost two siblings, his living siblings and his mothers > extended side of the family has many of the same disorders. Its been a battle > with his health for years now. It will take 4 weeks to get the DNA testing > back, but they are telling us now that its a classic case of mitochondrial > disorder. I'm trying to learn more, but what I'm reading doesn't sound real > promising. They have him taking coenzyme Q10 and carnitine, along with his > other > meds. Do people with several symptoms, get better taking those meds? I > know > nothing about this condition. Can anyone tell me a good website to learn > more about this, any help would be appreciated. Thanks. > > > Quote Link to comment Share on other sites More sharing options...
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