Guest guest Posted August 28, 1999 Report Share Posted August 28, 1999 I am a 29 year female with suspected MELAS syndrome. I have a history of seizures when I was younger and now on most days I have headaches, turning into migraines every 7 to 10 days. I am also hypoglycemic and have sinus problems. My mom had severe migraines and my grandmother had severe epilepsy. I am waiting for the genetic test to come back, but my lactic acid came back twice the norm, which tells me my genetic test is going to come back positive. I am having a hard time finding information on what to expect in the future. Can it get better, worse or stay the same? Does it affect life expectancy? What other areas can it affect? Basically, what do I have to look forward to? I would appreciate any information on this...I'm very scared and I want to know what I am dealing with. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 1999 Report Share Posted August 29, 1999 Janine Gentile wrote: > I am a 29 year female with suspected MELAS syndrome. Janine welcome to the list. We already have several s on this list, it will be great to have another Janine, (I spell it Jeannine). > I have a history of seizures when I was younger and now on most days I have headaches, turning into migraines every 7 to 10 days. I am also hypoglycemic and have sinus problems. My mom had severe migraines and my grandmother had severe epilepsy. You sound very similar to my two girls. They are 11 and 17 and both had seizures early on and later then settled into just migraine type headaches. Both of them had severe migraines with stroke like episodes where they appeared to lose skills and have other associated neurologic symptoms. They are also pretty severely hypoglycemic and tend to spill ketones easily. My youngest is the most severely affected and at one time was thought to have Melas, but then later was diagnosed thru muscle biopsy, with Complex IV deficiency and has also been presumed to have a melas/merf overlap type disease. But we have no real genetic documentation of that, it is presumed from the symptoms. > I am having a hard time finding information on what to expect in the future. Can it get better, worse or stay the same? Does it affect life expectancy? What other areas can it affect? Basically, what do I have to look forward to? Our experience has been that it is a treatable disease. I have three children that are affected in varying degrees of severity. All have responded quite well to co enzyme q and vitamin therapy. Yes it can get worse, but it also can get better when treated symptomatically. My youngest child has stabilized and improved dramatically over the past couple of years, as she has been treated aggressively and micro managed so to speak. Mitochondrial disease can affect virtually any organ system, depending upon how many " sick " mitochondria there are in that system. Management relies a lot on the use of antioxidants to slow down the progression of the disease; vit C, E, Alpha Lipoic Acid etc... Some people respond well to the mega doses of the B vitamins. There are some types of mito disease that are thought to be more life threatening than others, but on the whole it is supposed to be a treatable disease. My youngest child has responded quite well to IVIG and the use of steroids and her headaches and stroke like episodes are at a minimum. > I would appreciate any information on this...I'm very scared and I want to know what I am dealing with. I know that you will find this list a great source of information and support. Welcome! Jeannine, mom to Dalton, 20 yrs, ADD, LD, Presumed Complex IV Genny, 17 yrs, Severe Autonomic Dysfunction, Presumed Complex IV Caitlin, 11 yrs, Severe Autonomic Dysfunction, CIDP, Complex IV Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 1999 Report Share Posted August 29, 1999 janine.gentile@... wrote: > I appreciate the information you gave me. It's good to see there is hope. There is always hope!!! > Everything I've seen on the web has shown varying degrees of severity. This is very true, even my three children vary quite a bit in severity. Two people can have the exact same diagnosis, and still have very different manifestation of the disease. Even two people in the same family may be very different. > However, I did read that retinal pigmentary degeneration is > also a symptom, which I was diagnosed with back in March by my eye > doctor...I certainly didn't link the two. This is definitely linked to mitochondrial disease. Who is following you? You definitely need to follow up on this. > I currently manage my hypoglycemia with a lot of the vitamins that seem to > work with the MELAS. We also use corn starch at night to help with the hypoglycemia. It helps because it is a slowly metabolized sugar and helps to get through the night, so that you aren't depleting all your glycogen stores every night. We also use frequent snacks and a diet high in complex carbs. It makes all the difference in energy too. > I guess I'll just have to start up on the enzymes > and antioxidants. Have you read about the mito cocktail? Also you need to join the UMDF, the United Mitochondrial Disease Foundation. You can check out their web site at www.umdf.org for more information. They have a patient coordinator that can help you as well. There is also a newsletter that is full of great information. There was an article last year by Dr. Bruce Cohen that included the vitamins and supplements that he recommends in the mito cocktail. There is also another web site www.imdn.org They have a web board and chat room to meet other people. There is also a regularly scheduled chat at the MGH mito chat room every Sunday and Wednesday evening at 6 pm pacific time. Good luck, Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 1999 Report Share Posted August 29, 1999 Hi Janine, I don't blame you for being scared about all of this. It is frightening as there are a lot of unknowns. But I agree with Jeannine, there is always hope and this disease is definitely treatable. I have a 22 year old daughter with seizures, myoclonus, ataxia and nystagmus. She has been diagnosed with MELAS. We have been told that she will have episodes of illness and may very well fully recover from those. We have found this to be the true. She is managed on the vitamin cocktail and seizure medications and for the most part is doing great. She's a senior at Temple University this year and she is determined not to let this disease get in the way of her getting on with her life. You've come to a good place to learn what different people are doing to manage their mitochondrial disease, who the specialists in the field are, what studies are happening, what medications you should avoid, etc. Take good care of yourself and learn as much as you can to optimize your health. You CAN manage this disease and have a full, and meaningful life. Barbara mom to Alison/22/melas liver transplant due to depakote toxicity In a message dated 8/28/99 1:16 Eastern Daylight Time, Janine.Gentile@... writes: > I am having a hard time finding information on what to expect in the future. > Can it get better, worse or stay the same? Does it affect life expectancy? > What other areas can it affect? Basically, what do I have to look forward to? > > > I would appreciate any information on this...I'm very scared and I want to > know what I am dealing with. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 1999 Report Share Posted August 29, 1999 Hi Janine, I don't blame you for being scared about all of this. It is frightening as there are a lot of unknowns. But I agree with Jeannine, there is always hope and this disease is definitely treatable. I have a 22 year old daughter with seizures, myoclonus, ataxia and nystagmus. She has been diagnosed with MELAS. We have been told that she will have episodes of illness and may very well fully recover from those. We have found this to be the true. She is managed on the vitamin cocktail and seizure medications and for the most part is doing great. She's a senior at Temple University this year and she is determined not to let this disease get in the way of her getting on with her life. You've come to a good place to learn what different people are doing to manage their mitochondrial disease, who the specialists in the field are, what studies are happening, what medications you should avoid, etc. Take good care of yourself and learn as much as you can to optimize your health. You CAN manage this disease and have a full, and meaningful life. Barbara mom to Alison/22/melas liver transplant due to depakote toxicity In a message dated 8/28/99 1:16 Eastern Daylight Time, Janine.Gentile@... writes: > I am having a hard time finding information on what to expect in the future. > Can it get better, worse or stay the same? Does it affect life expectancy? > What other areas can it affect? Basically, what do I have to look forward to? > > > I would appreciate any information on this...I'm very scared and I want to > know what I am dealing with. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 1999 Report Share Posted August 29, 1999 Hi Janine, I don't blame you for being scared about all of this. It is frightening as there are a lot of unknowns. But I agree with Jeannine, there is always hope and this disease is definitely treatable. I have a 22 year old daughter with seizures, myoclonus, ataxia and nystagmus. She has been diagnosed with MELAS. We have been told that she will have episodes of illness and may very well fully recover from those. We have found this to be the true. She is managed on the vitamin cocktail and seizure medications and for the most part is doing great. She's a senior at Temple University this year and she is determined not to let this disease get in the way of her getting on with her life. You've come to a good place to learn what different people are doing to manage their mitochondrial disease, who the specialists in the field are, what studies are happening, what medications you should avoid, etc. Take good care of yourself and learn as much as you can to optimize your health. You CAN manage this disease and have a full, and meaningful life. Barbara mom to Alison/22/melas liver transplant due to depakote toxicity In a message dated 8/28/99 1:16 Eastern Daylight Time, Janine.Gentile@... writes: > I am having a hard time finding information on what to expect in the future. > Can it get better, worse or stay the same? Does it affect life expectancy? > What other areas can it affect? Basically, what do I have to look forward to? > > > I would appreciate any information on this...I'm very scared and I want to > know what I am dealing with. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 1999 Report Share Posted August 30, 1999 Hi Janine, My daughter, Pippa, who is 21 years old,was diagnosed with MELAS about 18 months ago. She has been in and out of hospital many times, but with careful management we are starting to get her life back in order. Pippa suffers from 'tonic clonic' epilepsy (only started when she was 19 years old), muscle weakness, migraine and spells of disorientation and confusion. We have found that along with her prescribed medication we have had some success with doses of Q10 coenzymes, a low steroid intake and various other vitamins. Unfortunately, Pippa has not ben able to continue with her University studies, but we are gradually introducing more stimulating activities back into her life. Pippa is very reliant on plenty of sleep and a healthy diet to keep the nasties away. All is not gloom and doom and, as you have heard, all cases of MELAS present somewhat differently. Good luck, and keep in touch - I'm sure that there will be mutual benefit if we keep talking to each other. Don Beard (from Perth, Western Australia), father to Pippa. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 1999 Report Share Posted August 30, 1999 Hi Janine, My daughter, Pippa, who is 21 years old,was diagnosed with MELAS about 18 months ago. She has been in and out of hospital many times, but with careful management we are starting to get her life back in order. Pippa suffers from 'tonic clonic' epilepsy (only started when she was 19 years old), muscle weakness, migraine and spells of disorientation and confusion. We have found that along with her prescribed medication we have had some success with doses of Q10 coenzymes, a low steroid intake and various other vitamins. Unfortunately, Pippa has not ben able to continue with her University studies, but we are gradually introducing more stimulating activities back into her life. Pippa is very reliant on plenty of sleep and a healthy diet to keep the nasties away. All is not gloom and doom and, as you have heard, all cases of MELAS present somewhat differently. Good luck, and keep in touch - I'm sure that there will be mutual benefit if we keep talking to each other. Don Beard (from Perth, Western Australia), father to Pippa. Quote Link to comment Share on other sites More sharing options...
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