Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 Sounds as if your friend is having a bad time of it. She needs to concentrate on the fact that this is going to be a temporary situation. She has been in the hospital more than she's been out since her operation and although they just checked to make sure everything's OK, she did have a second operation when they reopened her. It is no wonder she is without any appetite. It is very common to be able to take in only a couple sips of water at a time at the beginning, it is like she is beginning all over again. She should have a water bottle with her constantly and sip all day. She is probably on a soft diet, so soup is good to sip on as much as possible. Chicken egg drop soup adds some extra protein. She should eat every 2 or 3 hours also, don't drink any water for about 1/2 hour before eating so the stomach is empty. An open incision isn't fun, but if she follows instructions, it'll be fine. Also since she is probably on antibiotics, she should eat yougurt with the live cultures. Rita Black Open DS Dr. Macura 4/28/01 <My friend had her open ds on July 2nd with Dr. Macura of Staten Island. Since then, she's been hospitalized twice. The first time, they didn't know what was wrong with her so they reopened her incision to see if it was surgery related - it wasn't. She spent 2 weeks in ICU and the doctor's didn't know what was wrong with her. They treated her for TSS (toxic shock syndrome) and sent her home. Now she's back in the hospital (4 days after being released) because her incision started to reopen. Anyway, she's complaining of having NO APPETITE. Of getting full after 2 sips of water and SERIOUSLY regretting the whole surgery.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 Sounds as if your friend is having a bad time of it. She needs to concentrate on the fact that this is going to be a temporary situation. She has been in the hospital more than she's been out since her operation and although they just checked to make sure everything's OK, she did have a second operation when they reopened her. It is no wonder she is without any appetite. It is very common to be able to take in only a couple sips of water at a time at the beginning, it is like she is beginning all over again. She should have a water bottle with her constantly and sip all day. She is probably on a soft diet, so soup is good to sip on as much as possible. Chicken egg drop soup adds some extra protein. She should eat every 2 or 3 hours also, don't drink any water for about 1/2 hour before eating so the stomach is empty. An open incision isn't fun, but if she follows instructions, it'll be fine. Also since she is probably on antibiotics, she should eat yougurt with the live cultures. Rita Black Open DS Dr. Macura 4/28/01 <My friend had her open ds on July 2nd with Dr. Macura of Staten Island. Since then, she's been hospitalized twice. The first time, they didn't know what was wrong with her so they reopened her incision to see if it was surgery related - it wasn't. She spent 2 weeks in ICU and the doctor's didn't know what was wrong with her. They treated her for TSS (toxic shock syndrome) and sent her home. Now she's back in the hospital (4 days after being released) because her incision started to reopen. Anyway, she's complaining of having NO APPETITE. Of getting full after 2 sips of water and SERIOUSLY regretting the whole surgery.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2002 Report Share Posted June 17, 2002 I too am driving to distraction by the itchiness. After years of use of different products and I'm sure I am not done yet, I am currently using the rosacea care cleanser and will soon start the rosacea disks. I have tried the Sy products and I like them too. I believe that my sensitivity has increased over the years by too much product use. All the prescription creams just seemed to increase my itchiness so about a year ago I stopped all use of them. So then it was on to finding something on my own that would not irritate my skin. Bar soaps seem to be the worst ofender. Had a severe reaction to the Cetaphil soap that was recommened to use with the disks. So now am preparing my skin by just using the rosacea care cleanser and waiting for the itchiness and inflamations to subside before starting on the disks. So my advice to you is go slow and it really is a trial and error for everyone's different skin types and different reactions to various products. The old adage of what works for one rosacean does not work for the other rosacean is so true. Cindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 1. I have fought weight most of my life. SA 2. I use to feel ashamed around other people. SD 3. It was hard for me to look into the mirror. D 4. I used to secretly eat. D 5. I felt my physical and mental health suffered. A 6. I felt like I was always dieting. SA 7. When I dieted, I gained it all back, plus some. SA 8. I felt that I tried every other option available to me. SA 9. Food was my escape from life and reality. SD 10. I thoroughly researched Bariatric Surgery. SA 11. I was/am ready to commit to a better way of life. SA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 1. I have fought weight most of my life. SA 2. I use to feel ashamed around other people. SD 3. It was hard for me to look into the mirror. D 4. I used to secretly eat. D 5. I felt my physical and mental health suffered. A 6. I felt like I was always dieting. SA 7. When I dieted, I gained it all back, plus some. SA 8. I felt that I tried every other option available to me. SA 9. Food was my escape from life and reality. SD 10. I thoroughly researched Bariatric Surgery. SA 11. I was/am ready to commit to a better way of life. SA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 > I am doing a research class in my degree program and need to get > some answers from anyone that will help me out. I won't be using > any names so don't worry that you will be giving information that > others may see. This survey is how people felt before surgery. . > Please answer the following questions in this manner so that I may > collect accurate information for my report. SA, A, D, SD, or DA, at > the end of each stated sentence. > > Strongly agree Agree Disagree Strongly disagree Doesn't apply > (SA) (A) (D) (SD) (DA) > > 1. I have fought weight most of my life. A > > 2. I use to feel ashamed around other people. SA > > 3. It was hard for me to look into the mirror. SA > > 4. I used to secretly eat. A > > 5. I felt my physical and mental health suffered. SA > > 6. I felt like I was always dieting. A > > 7. When I dieted, I gained it all back, plus some. SA > > 8. I felt that I tried every other option available to me. SA > > 9. Food was my escape from life and reality. A > > 10. I thoroughly researched Bariatric Surgery. A > > 11. I was/am ready to commit to a better way of life. SA > > Thank you in advance for your help. > > Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 > I am doing a research class in my degree program and need to get > some answers from anyone that will help me out. I won't be using > any names so don't worry that you will be giving information that > others may see. This survey is how people felt before surgery. . > Please answer the following questions in this manner so that I may > collect accurate information for my report. SA, A, D, SD, or DA, at > the end of each stated sentence. > > Strongly agree Agree Disagree Strongly disagree Doesn't apply > (SA) (A) (D) (SD) (DA) > > 1. I have fought weight most of my life. A > > 2. I use to feel ashamed around other people. SA > > 3. It was hard for me to look into the mirror. SA > > 4. I used to secretly eat. A > > 5. I felt my physical and mental health suffered. SA > > 6. I felt like I was always dieting. A > > 7. When I dieted, I gained it all back, plus some. SA > > 8. I felt that I tried every other option available to me. SA > > 9. Food was my escape from life and reality. A > > 10. I thoroughly researched Bariatric Surgery. A > > 11. I was/am ready to commit to a better way of life. SA > > Thank you in advance for your help. > > Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2004 Report Share Posted February 23, 2004 In a message dated 2/22/2004 6:24:25 PM Eastern Standard Time, tammy_s1959@... writes: I am doing a research class in my degree program and need to get some answers from anyone that will help me out. I won't be using any names so don't worry that you will be giving information that others may see. This survey is how people felt before surgery. . Please answer the following questions in this manner so that I may collect accurate information for my report. SA, A, D, SD, or DA, at the end of each stated sentence. Strongly agree Agree Disagree Strongly disagree Doesn't apply (SA) (A) (D) (SD) (DA) 1. I have fought weight most of my life. A 2. I use to feel ashamed around other people. A 3. It was hard for me to look into the mirror. SA 4. I used to secretly eat. A 5. I felt my physical and mental health suffered. A 6. I felt like I was always dieting. A 7. When I dieted, I gained it all back, plus some. SA 8. I felt that I tried every other option available to me. A 9. Food was my escape from life and reality. A 10. I thoroughly researched Bariatric Surgery. A 11. I was/am ready to commit to a better way of life. SA Thank you in advance for your help. Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2004 Report Share Posted February 23, 2004 In a message dated 2/22/2004 6:24:25 PM Eastern Standard Time, tammy_s1959@... writes: I am doing a research class in my degree program and need to get some answers from anyone that will help me out. I won't be using any names so don't worry that you will be giving information that others may see. This survey is how people felt before surgery. . Please answer the following questions in this manner so that I may collect accurate information for my report. SA, A, D, SD, or DA, at the end of each stated sentence. Strongly agree Agree Disagree Strongly disagree Doesn't apply (SA) (A) (D) (SD) (DA) 1. I have fought weight most of my life. A 2. I use to feel ashamed around other people. A 3. It was hard for me to look into the mirror. SA 4. I used to secretly eat. A 5. I felt my physical and mental health suffered. A 6. I felt like I was always dieting. A 7. When I dieted, I gained it all back, plus some. SA 8. I felt that I tried every other option available to me. A 9. Food was my escape from life and reality. A 10. I thoroughly researched Bariatric Surgery. A 11. I was/am ready to commit to a better way of life. SA Thank you in advance for your help. Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 Hi - I remember you from amitys. I've actually been thinking about you and Emma alot lately and wondering how to get in contact with you again. I'm sorry to hear that Emma hasn't been doing well- we go through phases with Lea with ups and downs for no apparent reason. To me the episodes you are describing sound alot like seizures. Has she had seizures in the past? Another thing that came to mind with the drooling-- have you noticed any stroke-like episodes? Hope you find some answers very soon! le and Lea, living with partial complex 1 and 6 other very healthy kiddos > Ive been a member off and on for the last 3 years, but recently there have been some changes with my daughter. I am not sure how many of you remember Emma (www.emmas2hearts.com) She is 3, almost 4, and is a heart transplant patient with complex 1 and 3. (diagnosed after transplant) > > We have been doing amazingly well, no set backs whatsover. We almost forgot that she was sick. Over the last 3 weeks things have changed. It started with just behavior, we chalked it up to terrible 3's. Then it turned into not sleeping, and now things have gotten really odd. > > She doesnt sleep. She is going on about 3 hours of sleep a day. She is also making repetitive sounds all night long, similar to what tourrets patient do. Her speech has also become somewhat slurred, and she has regressed to sucking her thumb and drooling (although not all the time). Emma was a typical 3 year old up until this all started less than a month ago. > > We have met with her geneticist/mito doctor. He believes that she is having seizures, we are trying to get in for an EEG next week. What else could this be? It is like she has periods of the " old emma " and then other times she is almost in a daze, just wondering around the house. She has times where she is very verbal, then she has times where she doesnt speak, or she repeats the same sounds over and over (she laid in bed last night and repeated the same sequence of sounds for 3 hours) > > Any thoughts would be greatly appreciated. She is starting Adavan tonight to help sleep, and hopefully the EEG will shine some light on this, although I have heard that they dont always come out accurate. Our next step is an MRI, but right now I am very concerned about the changes I have seen in my little girl. > > Thank you for reading this, any response would be greatly appreciated. > > > www.emmas2hearts.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2006 Report Share Posted January 2, 2006 My neurologist suspects that I am suffering from an unknown mitochondrial disease. I am very depressed and worried. Can anyone provide me with the contact address (preferably email address ), of some experts in mitochondrial disorders. Regards, MQ pamelama33 pamelama33@...> wrote: Hi Joanne - here's my experience with cardiac arrhythmias (palpitations, tachycardia, fibrillation etc). They started one day when I was in my mid twenties. Doctors were not concerned as said it was a common thing. When I was 28 and had my first child I had trouble breastfeeding but was encouraged by Nursing Mothers to just keep on feeding and the milk would come. I took it to extreme and had my baby on the breast almost all the time (and still could not produce enough (Mito??)) Anyway during that period I had the most shocking palpitations which I put down to the extra stress my body was experiencing during that period. My whole body would shake and heart pounding sometimes up to an hour at a time. As it was coming on blood would rush into my neck and my head would get dizzy so I knew it was coming on. Resting would not help . I felt nauseated but moving around was better, but nothing stopped it till it was ready to stop. Over the years the palpitations continued (doctors not concerned), no telling what triggered them, except that I noticed sometimes they would start when I had bent over say to tie shoelaces and straightened up after that, and I could sometimes stop them by holding my breath and going back down again for a while, and after a while coming up slowly while exhaling. I am 56 now and at this age doctors have been more concerned when palpitations have occurred, as they have said there is more likelihood for blockages like plaque in the arteries. I had a bad episode and went to the doc several years ago but wouldn't you know it it stopped just as I was sitting down in the chair. He sent me to a cardiologist who gave me exercise stress test and echo which were normal (exercise was not normally a trigger so this was not really a good test though). So they said don wurry be appy. So I threw myself into my high stress IT job, but when I worked for long hours my heart would start pounding. Two months later I had a heart attack and was in intensive coronary care for three days. Angiogram showed clear arteries so they were all completely confused as my heart was in spasm (still four years later ECG shows damage). It was called coronary artery spasm, and one called it tako tsubo syndrome although current cardio says it was due to high cholesterol and plaque not evident at the time . I don't know if the heart attack had anything to do with the palpitations. I had atrial fibrillation recorded during the infarction (but not the worse one ventricular fibrillation). I was put on heaps of medications including statins and couldnt tolerate (now know why). I still had pounding episodes during periods of stress (either physical or emotional) and caught one episode of atrial fibrillation on a 24-hour monitor so cardio now has me on Isoptin (Verapamil) 120mg. ( I also take Questran and Ezetrol for cholesterol). The Isoptin seems to have stopped the arrhythmia - I can sometimes feel it wanting to come on but it doesn't continue. I think Isoptin lowers blood pressure but not sure so it may just be for certain people. I don't know if any of this helps. Now I know I have mito (Melas) I can't help but think they are all connected. I feel continuing stress is a factor (and certainly was for my infarct), although as you say one often " feels " relaxed when they start. Maybe its a conduction malfunction which I understand can be part of mito (and according to what I have read, a pacemaker may rectify this). Since you do have this problem I would recommend keeping a close eye on your body's cholesterol levels. I also am interested to hear of other cardiac stories. pamela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2006 Report Share Posted January 2, 2006 Hi Pamela, OK, I will ask a specific question. Do any of you have optic nerve atrophy. I was diagnosed with this condition in 1995, but it is only now that my vision is declining very fast. Besides, this I have hearng loss, ataxia and peripheral neuropathy. I want to know how long will it take for my vision to be lost completely or how long before I can no longer read. I am very depressed . Can alternative treatment like acupuncture help my vision? Is stem cell treatment an option in mitochondrial disorders. Since my doctor says that I am suffering from an unknown mito disease, many of you may not have similar symptoms. Regards MQ pamelama33 pamelama33@...> wrote: Hi MQ - I am fairly new but this forum is a wealth of information - ask specific questions and you will get responses. If you want a doctor to respond you can email the Ask the Mito Doc on the UMDF site, at www.umdf.org/MitoDoc.aspx pamela please help My neurologist suspects that I am suffering from an unknown mitochondrial disease. I am very depressed and worried. Can anyone provide me with the contact address (preferably email address ), of some experts in mitochondrial disorders. Regards, MQ pamelama33 pamelama33@...> wrote: Hi Joanne - here's my experience with cardiac arrhythmias (palpitations, tachycardia, fibrillation etc). They started one day when I was in my mid twenties. Doctors were not concerned as said it was a common thing. When I was 28 and had my first child I had trouble breastfeeding but was encouraged by Nursing Mothers to just keep on feeding and the milk would come. I took it to extreme and had my baby on the breast almost all the time (and still could not produce enough (Mito??)) Anyway during that period I had the most shocking palpitations which I put down to the extra stress my body was experiencing during that period. My whole body would shake and heart pounding sometimes up to an hour at a time. As it was coming on blood would rush into my neck and my head would get dizzy so I knew it was coming on. Resting would not help . I felt nauseated but moving around was better, but nothing stopped it till it was ready to stop. Over the years the palpitations continued (doctors not concerned), no telling what triggered them, except that I noticed sometimes they would start when I had bent over say to tie shoelaces and straightened up after that, and I could sometimes stop them by holding my breath and going back down again for a while, and after a while coming up slowly while exhaling. I am 56 now and at this age doctors have been more concerned when palpitations have occurred, as they have said there is more likelihood for blockages like plaque in the arteries. I had a bad episode and went to the doc several years ago but wouldn't you know it it stopped just as I was sitting down in the chair. He sent me to a cardiologist who gave me exercise stress test and echo which were normal (exercise was not normally a trigger so this was not really a good test though). So they said don wurry be appy. So I threw myself into my high stress IT job, but when I worked for long hours my heart would start pounding. Two months later I had a heart attack and was in intensive coronary care for three days. Angiogram showed clear arteries so they were all completely confused as my heart was in spasm (still four years later ECG shows damage). It was called coronary artery spasm, and one called it tako tsubo syndrome although current cardio says it was due to high cholesterol and plaque not evident at the time . I don't know if the heart attack had anything to do with the palpitations. I had atrial fibrillation recorded during the infarction (but not the worse one ventricular fibrillation). I was put on heaps of medications including statins and couldnt tolerate (now know why). I still had pounding episodes during periods of stress (either physical or emotional) and caught one episode of atrial fibrillation on a 24-hour monitor so cardio now has me on Isoptin (Verapamil) 120mg. ( I also take Questran and Ezetrol for cholesterol). The Isoptin seems to have stopped the arrhythmia - I can sometimes feel it wanting to come on but it doesn't continue. I think Isoptin lowers blood pressure but not sure so it may just be for certain people. I don't know if any of this helps. Now I know I have mito (Melas) I can't help but think they are all connected. I feel continuing stress is a factor (and certainly was for my infarct), although as you say one often " feels " relaxed when they start. Maybe its a conduction malfunction which I understand can be part of mito (and according to what I have read, a pacemaker may rectify this). Since you do have this problem I would recommend keeping a close eye on your body's cholesterol levels. I also am interested to hear of other cardiac stories. pamela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2006 Report Share Posted January 2, 2006 What part of the country are you in? How far are you willing to travel? Most of the mito docs do NOT correspond with patients via email (several are at facilities that prohibit it). I'd be happy to supply names and geographic locations privately. If that would help, let me know. medical question mark medical_questionmark@...> wrote: My neurologist suspects that I am suffering from an unknown mitochondrial disease. I am very depressed and worried. Can anyone provide me with the contact address (preferably email address ), of some experts in mitochondrial disorders. Regards, MQ pamelama33 pamelama33@...> wrote: Hi Joanne - here's my experience with cardiac arrhythmias (palpitations, tachycardia, fibrillation etc). They started one day when I was in my mid twenties. Doctors were not concerned as said it was a common thing. When I was 28 and had my first child I had trouble breastfeeding but was encouraged by Nursing Mothers to just keep on feeding and the milk would come. I took it to extreme and had my baby on the breast almost all the time (and still could not produce enough (Mito??)) Anyway during that period I had the most shocking palpitations which I put down to the extra stress my body was experiencing during that period. My whole body would shake and heart pounding sometimes up to an hour at a time. As it was coming on blood would rush into my neck and my head would get dizzy so I knew it was coming on. Resting would not help . I felt nauseated but moving around was better, but nothing stopped it till it was ready to stop. Over the years the palpitations continued (doctors not concerned), no telling what triggered them, except that I noticed sometimes they would start when I had bent over say to tie shoelaces and straightened up after that, and I could sometimes stop them by holding my breath and going back down again for a while, and after a while coming up slowly while exhaling. I am 56 now and at this age doctors have been more concerned when palpitations have occurred, as they have said there is more likelihood for blockages like plaque in the arteries. I had a bad episode and went to the doc several years ago but wouldn't you know it it stopped just as I was sitting down in the chair. He sent me to a cardiologist who gave me exercise stress test and echo which were normal (exercise was not normally a trigger so this was not really a good test though). So they said don wurry be appy. So I threw myself into my high stress IT job, but when I worked for long hours my heart would start pounding. Two months later I had a heart attack and was in intensive coronary care for three days. Angiogram showed clear arteries so they were all completely confused as my heart was in spasm (still four years later ECG shows damage). It was called coronary artery spasm, and one called it tako tsubo syndrome although current cardio says it was due to high cholesterol and plaque not evident at the time . I don't know if the heart attack had anything to do with the palpitations. I had atrial fibrillation recorded during the infarction (but not the worse one ventricular fibrillation). I was put on heaps of medications including statins and couldnt tolerate (now know why). I still had pounding episodes during periods of stress (either physical or emotional) and caught one episode of atrial fibrillation on a 24-hour monitor so cardio now has me on Isoptin (Verapamil) 120mg. ( I also take Questran and Ezetrol for cholesterol). The Isoptin seems to have stopped the arrhythmia - I can sometimes feel it wanting to come on but it doesn't continue. I think Isoptin lowers blood pressure but not sure so it may just be for certain people. I don't know if any of this helps. Now I know I have mito (Melas) I can't help but think they are all connected. I feel continuing stress is a factor (and certainly was for my infarct), although as you say one often " feels " relaxed when they start. Maybe its a conduction malfunction which I understand can be part of mito (and according to what I have read, a pacemaker may rectify this). Since you do have this problem I would recommend keeping a close eye on your body's cholesterol levels. I also am interested to hear of other cardiac stories. pamela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2006 Report Share Posted January 2, 2006 I don't know if any of the adults on this list have optic nerve atrophy but I do know several of the children on the general mito list do. My girls (teen/young adults) both have peripheral neuropathy, hearing loss and intermittent ataxia. My 20 year old has vision issues that seem to be related to the lack of energy. The last time she saw her Neuro-ophthamologist he indicated that in the context of mitochondrial disease he could NOT predict the rate of progression of vision loss. Some days are good and others are not. I have never heard that acupuncture is a treatment for visual preservation. Stem cell research is still far in the future in the context of mitochondrial disease. General gene therapy is being used on a very limited RESEARCH basis for several of the other diseases in the dystrophy family. Note: the results have been far from promising across the board in the dystrophies. Solid organ transplants have been done successfully incarefully selected patients with mitochondrial disase. I can understand the resultant depression. Are you being helped? The mito maze and all of the implications are difficult to swallow. Sometimes being proactive can help. You know what you cannot change. Can you look ahead in regards to what you can do to accommodate to the changes? Example: my girls have service dogs to respond to apnea, monitor/ventilator alarms, balance support, etc. We have introduced training for " hearing alert " tasks as there are sounds we don't want the girls to miss when their hearing is not as acute. medical question mark medical_questionmark@...> wrote: Hi Pamela, OK, I will ask a specific question. Do any of you have optic nerve atrophy. I was diagnosed with this condition in 1995, but it is only now that my vision is declining very fast. Besides, this I have hearng loss, ataxia and peripheral neuropathy. I want to know how long will it take for my vision to be lost completely or how long before I can no longer read. I am very depressed . Can alternative treatment like acupuncture help my vision? Is stem cell treatment an option in mitochondrial disorders. Since my doctor says that I am suffering from an unknown mito disease, many of you may not have similar symptoms. Regards MQ Joanne Kocourek (mom to , lies, and ) visit us at: http://www.caringbridge.org/il/annakris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 MQ, Regarding finding a doctor through UMDF, I wanted to mention that when I did that, the doctors they referred me to were not doctors that anyone else on this list said they went to. Also, the hospital they were at was not one that the people on this list said they go to and trust (at least with mito; otherwise, it was a fine hospital). It is not clear to me that the names that UMDF offers are ones that they have actual exprience with or not. If you get names from them, you might want to check with this group and see if other people have had experience with those doctors. Hi Joanne - here's my experience with cardiac arrhythmias (palpitations, tachycardia, fibrillation etc). They started one day when I was in my mid twenties. Doctors were not concerned as said it was a common thing. When I was 28 and had my first child I had trouble breastfeeding but was encouraged by Nursing Mothers to just keep on feeding and the milk would come. I took it to extreme and had my baby on the breast almost all the time (and still could not produce enough (Mito??)) Anyway during that period I had the most shocking palpitations which I put down to the extra stress my body was experiencing during that period. My whole body would shake and heart pounding sometimes up to an hour at a time. As it was coming on blood would rush into my neck and my head would get dizzy so I knew it was coming on. Resting would not help . I felt nauseated but moving around was better, but nothing stopped it till it was ready to stop. Over > the years the palpitations continued (doctors not concerned), no telling what triggered them, except that I noticed sometimes they would start when I had bent over say to tie shoelaces and straightened up after that, and I could sometimes stop them by holding my breath and going back down again for a while, and after a while coming up slowly while exhaling. > > I am 56 now and at this age doctors have been more concerned when palpitations have occurred, as they have said there is more likelihood for blockages like plaque in the arteries. I had a bad episode and went to the doc several years ago but wouldn't you know it it stopped just as I was sitting down in the chair. He sent me to a cardiologist who gave me exercise stress test and echo which were normal (exercise was not normally a trigger so this was not really a good test though). So they said don wurry be appy. So I threw myself into my high stress IT job, but when I worked for long hours my heart would start pounding. Two months later I had a heart attack and was in intensive coronary care for three days. Angiogram showed clear arteries so they were all completely confused as my heart was in spasm (still four years later ECG shows damage). It was called coronary artery spasm, and one called it tako tsubo syndrome although current cardio says it was due to high cholesterol and > plaque not evident at the time . > > I don't know if the heart attack had anything to do with the palpitations. I had atrial fibrillation recorded during the infarction (but not the worse one ventricular fibrillation). I was put on heaps of medications including statins and couldnt tolerate (now know why). I still had pounding episodes during periods of stress (either physical or emotional) and caught one episode of atrial fibrillation on a 24-hour monitor so cardio now has me on Isoptin (Verapamil) 120mg. ( I also take Questran and Ezetrol for cholesterol). The Isoptin seems to have stopped the arrhythmia - I can sometimes feel it wanting to come on but it doesn't continue. I think Isoptin lowers blood pressure but not sure so it may just be for certain people. > > I don't know if any of this helps. Now I know I have mito (Melas) I can't help but think they are all connected. I feel continuing stress is a factor (and certainly was for my infarct), although as you say one often " feels " relaxed when they start. Maybe its a conduction malfunction which I understand can be part of mito (and according to what I have read, a pacemaker may rectify this). Since you do have this problem I would recommend keeping a close eye on your body's cholesterol levels. I also am interested to hear of other cardiac stories. pamela > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 I have never been told that I have optic atrophy, but that my retinas aRE DEGENERATING. I also have right sided deafness. My retinal specialist doesn't know if my retina degeneration is related to the mito or not because he doesn't have anyone to compare me to. medical question mark medical_questionmark@...> wrote: Hi Pamela, OK, I will ask a specific question. Do any of you have optic nerve atrophy. I was diagnosed with this condition in 1995, but it is only now that my vision is declining very fast. Besides, this I have hearng loss, ataxia and peripheral neuropathy. I want to know how long will it take for my vision to be lost completely or how long before I can no longer read. I am very depressed . Can alternative treatment like acupuncture help my vision? Is stem cell treatment an option in mitochondrial disorders. Since my doctor says that I am suffering from an unknown mito disease, many of you may not have similar symptoms. Regards MQ pamelama33 pamelama33@...> wrote: Hi MQ - I am fairly new but this forum is a wealth of information - ask specific questions and you will get responses. If you want a doctor to respond you can email the Ask the Mito Doc on the UMDF site, at www.umdf.org/MitoDoc.aspx pamela please help My neurologist suspects that I am suffering from an unknown mitochondrial disease. I am very depressed and worried. Can anyone provide me with the contact address (preferably email address ), of some experts in mitochondrial disorders. Regards, MQ pamelama33 pamelama33@...> wrote: Hi Joanne - here's my experience with cardiac arrhythmias (palpitations, tachycardia, fibrillation etc). They started one day when I was in my mid twenties. Doctors were not concerned as said it was a common thing. When I was 28 and had my first child I had trouble breastfeeding but was encouraged by Nursing Mothers to just keep on feeding and the milk would come. I took it to extreme and had my baby on the breast almost all the time (and still could not produce enough (Mito??)) Anyway during that period I had the most shocking palpitations which I put down to the extra stress my body was experiencing during that period. My whole body would shake and heart pounding sometimes up to an hour at a time. As it was coming on blood would rush into my neck and my head would get dizzy so I knew it was coming on. Resting would not help . I felt nauseated but moving around was better, but nothing stopped it till it was ready to stop. Over the years the palpitations continued (doctors not concerned), no telling what triggered them, except that I noticed sometimes they would start when I had bent over say to tie shoelaces and straightened up after that, and I could sometimes stop them by holding my breath and going back down again for a while, and after a while coming up slowly while exhaling. I am 56 now and at this age doctors have been more concerned when palpitations have occurred, as they have said there is more likelihood for blockages like plaque in the arteries. I had a bad episode and went to the doc several years ago but wouldn't you know it it stopped just as I was sitting down in the chair. He sent me to a cardiologist who gave me exercise stress test and echo which were normal (exercise was not normally a trigger so this was not really a good test though). So they said don wurry be appy. So I threw myself into my high stress IT job, but when I worked for long hours my heart would start pounding. Two months later I had a heart attack and was in intensive coronary care for three days. Angiogram showed clear arteries so they were all completely confused as my heart was in spasm (still four years later ECG shows damage). It was called coronary artery spasm, and one called it tako tsubo syndrome although current cardio says it was due to high cholesterol and plaque not evident at the time . I don't know if the heart attack had anything to do with the palpitations. I had atrial fibrillation recorded during the infarction (but not the worse one ventricular fibrillation). I was put on heaps of medications including statins and couldnt tolerate (now know why). I still had pounding episodes during periods of stress (either physical or emotional) and caught one episode of atrial fibrillation on a 24-hour monitor so cardio now has me on Isoptin (Verapamil) 120mg. ( I also take Questran and Ezetrol for cholesterol). The Isoptin seems to have stopped the arrhythmia - I can sometimes feel it wanting to come on but it doesn't continue. I think Isoptin lowers blood pressure but not sure so it may just be for certain people. I don't know if any of this helps. Now I know I have mito (Melas) I can't help but think they are all connected. I feel continuing stress is a factor (and certainly was for my infarct), although as you say one often " feels " relaxed when they start. Maybe its a conduction malfunction which I understand can be part of mito (and according to what I have read, a pacemaker may rectify this). Since you do have this problem I would recommend keeping a close eye on your body's cholesterol levels. I also am interested to hear of other cardiac stories. pamela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Hello, Thanks friends for replying back. Actually I live in outside USA, India. My neurologist says that I am suffering from an unknown mitochondrial disorder, though he is not sure. He says that we could reach a definite diagnosis if a detailed genetic analysis is carried out, which is a expensive test, and may only be possible in the US. And even if the diagnosis is made, there is no cure. I have some questions to ask. Has anyone undergone a detailed genetic analysis, and what is the cost. For Joanne, I have specific question. Since your girls have similar symptoms like me, peripheral neuropathy, hearing lossand intermittent ataxia, and vision problems, it is possible that my condition is similar to theirs. Can u let me know the name of the disease they are suffering from. Please also let me know the address of the general mito list. Regards MQ Joanne Kocourek servedogmom@...> wrote: I don't know if any of the adults on this list have optic nerve atrophy but I do know several of the children on the general mito list do. My girls (teen/young adults) both have peripheral neuropathy, hearing loss and intermittent ataxia. My 20 year old has vision issues that seem to be related to the lack of energy. The last time she saw her Neuro-ophthamologist he indicated that in the context of mitochondrial disease he could NOT predict the rate of progression of vision loss. Some days are good and others are not. I have never heard that acupuncture is a treatment for visual preservation. Stem cell research is still far in the future in the context of mitochondrial disease. General gene therapy is being used on a very limited RESEARCH basis for several of the other diseases in the dystrophy family. Note: the results have been far from promising across the board in the dystrophies. Solid organ transplants have been done successfully incarefully selected patients with mitochondrial disase. I can understand the resultant depression. Are you being helped? The mito maze and all of the implications are difficult to swallow. Sometimes being proactive can help. You know what you cannot change. Can you look ahead in regards to what you can do to accommodate to the changes? Example: my girls have service dogs to respond to apnea, monitor/ventilator alarms, balance support, etc. We have introduced training for " hearing alert " tasks as there are sounds we don't want the girls to miss when their hearing is not as acute. medical question mark medical_questionmark@...> wrote: Hi Pamela, OK, I will ask a specific question. Do any of you have optic nerve atrophy. I was diagnosed with this condition in 1995, but it is only now that my vision is declining very fast. Besides, this I have hearng loss, ataxia and peripheral neuropathy. I want to know how long will it take for my vision to be lost completely or how long before I can no longer read. I am very depressed . Can alternative treatment like acupuncture help my vision? Is stem cell treatment an option in mitochondrial disorders. Since my doctor says that I am suffering from an unknown mito disease, many of you may not have similar symptoms. Regards MQ Joanne Kocourek (mom to , lies, and ) visit us at: http://www.caringbridge.org/il/annakris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 First, very few individuals with a diagnosis of mitochondrial disease actually know the genetic abnormality (the last I heard was around 15% total between blood and muscle studies). We do NOT know the specific genetic defect in my girls. This is what we do know: they have abnormalities in Complex I, III, IV and ANT function. They also have issues with the metabolism of fat that are secondary to mitochondrial disease. One of the physician is doing a study of the entire mitochondrial genome for my girls. He has had the tissue sample over three years and we still have no results. THe cost, if it was not being done onm a research basis, would be well into the $100,000 range (US). Second: While it is true that there is NO cure. There is treatment that may slow the progression of the disease in soem individuals. My girls definitely feel better when taking the mito cocktail. The general mito list is one of the yahoo groups called mito. (You will find in in the same search where you likely found . medical question mark medical_questionmark@...> wrote: Hello, Thanks friends for replying back. Actually I live in outside USA, India. My neurologist says that I am suffering from an unknown mitochondrial disorder, though he is not sure. He says that we could reach a definite diagnosis if a detailed genetic analysis is carried out, which is a expensive test, and may only be possible in the US. And even if the diagnosis is made, there is no cure. I have some questions to ask. Has anyone undergone a detailed genetic analysis, and what is the cost. For Joanne, I have specific question. Since your girls have similar symptoms like me, peripheral neuropathy, hearing lossand intermittent ataxia, and vision problems, it is possible that my condition is similar to theirs. Can u let me know the name of the disease they are suffering from. Please also let me know the address of the general mito list. Joanne Kocourek (mom to , lies, and ) visit us at: http://www.caringbridge.org/il/annakris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 How did the doctors conclude that your girls had abnormalities in Complex I, III, IV and ANT function. What tests were performed? My neurologist has prescribed vitamin e, vitamin b ,vitamin c and CQ10. I have read that the mito cocktail also includes other vitamins also. What kind ofvitamins and other supplements do your girls take. I did not have much problem with my vision until recently, when I went on a low carb diet. Prior to this I had suffered from an eye infection, it is only now that I have come to know that mito disease sufferers should eat three regular meals. Can you let me know the names of institutes in US, where such genetic analysis is done on a research basis, Have your girls ever tried any alternative medicine Regards Mq Joanne Kocourek servedogmom@...> wrote: First, very few individuals with a diagnosis of mitochondrial disease actually know the genetic abnormality (the last I heard was around 15% total between blood and muscle studies). We do NOT know the specific genetic defect in my girls. This is what we do know: they have abnormalities in Complex I, III, IV and ANT function. They also have issues with the metabolism of fat that are secondary to mitochondrial disease. One of the physician is doing a study of the entire mitochondrial genome for my girls. He has had the tissue sample over three years and we still have no results. THe cost, if it was not being done onm a research basis, would be well into the $100,000 range (US). Second: While it is true that there is NO cure. There is treatment that may slow the progression of the disease in soem individuals. My girls definitely feel better when taking the mito cocktail. The general mito list is one of the yahoo groups called mito. (You will find in in the same search where you likely found . medical question mark medical_questionmark@...> wrote: Hello, Thanks friends for replying back. Actually I live in outside USA, India. My neurologist says that I am suffering from an unknown mitochondrial disorder, though he is not sure. He says that we could reach a definite diagnosis if a detailed genetic analysis is carried out, which is a expensive test, and may only be possible in the US. And even if the diagnosis is made, there is no cure. I have some questions to ask. Has anyone undergone a detailed genetic analysis, and what is the cost. For Joanne, I have specific question. Since your girls have similar symptoms like me, peripheral neuropathy, hearing lossand intermittent ataxia, and vision problems, it is possible that my condition is similar to theirs. Can u let me know the name of the disease they are suffering from. Please also let me know the address of the general mito list. Joanne Kocourek (mom to , lies, and ) visit us at: http://www.caringbridge.org/il/annakris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 The diagnosis was obtained by skin fibroblast studies and fresh muscle biopsies. (Multiple). My girls take the following: Coenzyme Q10 (very high doses), Carnitor, Vit E, High dose riboflavin, B50 Complex, Vit C, Niacinamide, Selenium, Alpha Lipoic Acid, a mulitvitamin, and multiple meds to address each of the affected organ systems. This is considered a component of alternative medicine. Over time we've tried guided imagry, biofeedback, massage, etc without any improvement. They are on a high, complex carb, very low fat diet with 5-6 smaller meals each day and lots of oral fluids (3,000-3500cc). AS far as I know the genetics studies are being done in Atlanta, UC Irvine, possibly Columbia and UCSF. medical question mark medical_questionmark@...> wrote: How did the doctors conclude that your girls had abnormalities in Complex I, III, IV and ANT function. What tests were performed? What kind ofvitamins and other supplements do your girls take. I did not have much problem with my vision until recently, when I went on a low carb diet. Prior to this I had suffered from an eye infection, it is only now that I have come to know that mito disease sufferers should eat three regular meals. Can you let me know the names of institutes in US, where such genetic analysis is done on a research basis, Have your girls ever tried any alternative medicine Joanne Kocourek (mom to , lies, and ) visit us at: http://www.caringbridge.org/il/annakris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 Thanks a lot for answering my questions, I will be asking doctors in India, if I could benefit from a skin and muscle biopsy. I have also read that mitochondrial diseases can affect any organ any time. How true is that? Also, that many mito diseases are characterizd by mental retardation and cognitive involvement . could we say that one day my intellectual capabilities may be affected. Are your girls still studying or have they entered the worforce. I am a writer-working from home. Please give my best to youdaughters . I will be praying for them. Regards Mq Joanne Kocourek servedogmom@...> wrote: The diagnosis was obtained by skin fibroblast studies and fresh muscle biopsies. (Multiple). My girls take the following: Coenzyme Q10 (very high doses), Carnitor, Vit E, High dose riboflavin, B50 Complex, Vit C, Niacinamide, Selenium, Alpha Lipoic Acid, a mulitvitamin, and multiple meds to address each of the affected organ systems. This is considered a component of alternative medicine. Over time we've tried guided imagry, biofeedback, massage, etc without any improvement. They are on a high, complex carb, very low fat diet with 5-6 smaller meals each day and lots of oral fluids (3,000-3500cc). AS far as I know the genetics studies are being done in Atlanta, UC Irvine, possibly Columbia and UCSF. medical question mark medical_questionmark@...> wrote: How did the doctors conclude that your girls had abnormalities in Complex I, III, IV and ANT function. What tests were performed? What kind ofvitamins and other supplements do your girls take. I did not have much problem with my vision until recently, when I went on a low carb diet. Prior to this I had suffered from an eye infection, it is only now that I have come to know that mito disease sufferers should eat three regular meals. Can you let me know the names of institutes in US, where such genetic analysis is done on a research basis, Have your girls ever tried any alternative medicine Joanne Kocourek (mom to , lies, and ) visit us at: http://www.caringbridge.org/il/annakris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 MQ When the number of normally functioning mitochondria goes below that level needed to function properly, then that organ system begins to mal-function. This is my belief - taking the mito cocktail (lots of antioxidents) helps to protect the good mitochondria from being damaged and maintains function longer. Mental retardation is more apt to be found in children as far as I understand. There are those with specific defects (in adults and children) that are more apt to get dementia. Since the aging process is due to damage and inadequate functioning of the mitochondria, early aging of the brain is possible. Some of us have problems with finding the word we want to use as easily as we would like, but the rest of our brains work fine. Loosing my mental functioning is one of my greatest fears. laurie > > > Thanks a lot for answering my questions, > I will be asking doctors in India, if I could benefit from a skin and > muscle biopsy. > > I have also read that mitochondrial diseases can affect any organ any > time. How true is that? > > Also, that many mito diseases are characterizd by mental retardation and > cognitive involvement . could we say that one day my intellectual > capabilities may be affected. > > Are your girls still studying or have they entered the worforce. > > I am a writer-working from home. Please give my best to youdaughters . > > I will be praying for them. > > Regards > Mq > > Joanne Kocourek servedogmom@...> wrote: The diagnosis was obtained > by skin fibroblast studies and fresh muscle biopsies. (Multiple). > > > My girls take the following: Coenzyme Q10 (very high doses), Carnitor, Vit > E, High dose riboflavin, B50 Complex, Vit C, Niacinamide, Selenium, Alpha > Lipoic Acid, a mulitvitamin, and multiple meds to address each of the > affected organ systems. This is considered a component of alternative > medicine. Over time we've tried guided imagry, biofeedback, massage, etc > without any improvement. > > They are on a high, complex carb, very low fat diet with 5-6 smaller meals > each day and lots of oral fluids (3,000-3500cc). > > AS far as I know the genetics studies are being done in Atlanta, UC Irvine, > possibly Columbia and UCSF. > > medical question mark medical_questionmark@...> wrote: > How did the doctors conclude that your girls had abnormalities in > Complex I, III, IV and ANT function. What tests were performed? > > What kind ofvitamins and other supplements do your girls take. > > > I did not have much problem with my vision until recently, when I went > on a low carb diet. Prior to this I had suffered from an eye infection, it > is only now that I have come to know that mito disease sufferers should eat > three regular meals. > > Can you let me know the names of institutes in US, where such genetic > analysis is done on a research basis, > > Have your girls ever tried any alternative medicine > > > > > > Joanne Kocourek (mom to , lies, and ) > visit us at: http://www.caringbridge.org/il/annakris > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 Laurie, I feel the same way. I have been battling this dementia for awhile now. Plus I have thyroid problems,which also does not help with the brain functioning properly. But since I feel the melas (mito) problem is getting worse, I can't comprehend,I say things that are totally off the wall,can't think about certain things,and I can't remember much.It has taken away my love for reading, etc. I can't fill out the simplest of forms.So I fear for the loss also. I am not a child and believe me it is very hard to except. I do childrens books, trying to keep up some part of my brain working. --- Laurie Fitzgerald laurie.fitzgerald@...> wrote: > MQ > > When the number of normally functioning mitochondria > goes below that > level needed to function properly, then that organ > system begins to > mal-function. This is my belief - taking the mito > cocktail (lots of > antioxidents) helps to protect the good mitochondria > from being > damaged and maintains function longer. > > Mental retardation is more apt to be found in > children as far as I > understand. There are those with specific defects > (in adults and > children) that are more apt to get dementia. Since > the aging process > is due to damage and inadequate functioning of the > mitochondria, early > aging of the brain is possible. Some of us have > problems with finding > the word we want to use as easily as we would like, > but the rest of > our brains work fine. Loosing my mental functioning > is one of my > greatest fears. > > laurie > > On 3/3/06, medical question mark > medical_questionmark@...> wrote: > > > > > > Thanks a lot for answering my questions, > > I will be asking doctors in India, if I could > benefit from a skin and > > muscle biopsy. > > > > I have also read that mitochondrial diseases > can affect any organ any > > time. How true is that? > > > > Also, that many mito diseases are characterizd > by mental retardation and > > cognitive involvement . could we say that one > day my intellectual > > capabilities may be affected. > > > > Are your girls still studying or have they > entered the worforce. > > > > I am a writer-working from home. Please give my > best to youdaughters . > > > > I will be praying for them. > > > > Regards > > Mq > > > > Joanne Kocourek servedogmom@...> wrote: > The diagnosis was obtained > > by skin fibroblast studies and fresh muscle > biopsies. (Multiple). > > > > > > My girls take the following: Coenzyme Q10 (very > high doses), Carnitor, Vit > > E, High dose riboflavin, B50 Complex, Vit C, > Niacinamide, Selenium, Alpha > > Lipoic Acid, a mulitvitamin, and multiple meds to > address each of the > > affected organ systems. This is considered a > component of alternative > > medicine. Over time we've tried guided imagry, > biofeedback, massage, etc > > without any improvement. > > > > They are on a high, complex carb, very low fat > diet with 5-6 smaller meals > > each day and lots of oral fluids (3,000-3500cc). > > > > AS far as I know the genetics studies are being > done in Atlanta, UC Irvine, > > possibly Columbia and UCSF. > > > > medical question mark > medical_questionmark@...> wrote: > > How did the doctors conclude that your girls > had abnormalities in > > Complex I, III, IV and ANT function. What tests > were performed? > > > > What kind ofvitamins and other supplements do > your girls take. > > > > > > I did not have much problem with my vision > until recently, when I went > > on a low carb diet. Prior to this I had suffered > from an eye infection, it > > is only now that I have come to know that mito > disease sufferers should eat > > three regular meals. > > > > Can you let me know the names of institutes in > US, where such genetic > > analysis is done on a research basis, > > > > Have your girls ever tried any alternative > medicine > > > > > > > > > > > > Joanne Kocourek (mom to , lies, and > ) > > visit us at: > http://www.caringbridge.org/il/annakris > > > > [Non-text portions of this message have been > removed] > > > > > > > > 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 3, 2006 Report Share Posted March 3, 2006 Irene I admire your determination and your gift to write children's books. I have tried my hand at writing and illustrating early phonic books for my students, and it is not an easy task. Does saving your energy by sitting to do things and taking a nap help with the mental function? I'll keep you in my thoughts, laurie > Laurie, I feel the same way. I have been battling this > dementia for awhile now. Plus I have thyroid > problems,which also does not help with the brain > functioning properly. But since I feel the melas > (mito) problem is getting worse, I can't comprehend,I > say things that are totally off the wall,can't think > about certain things,and I can't remember much.It has > taken away my love for reading, etc. I can't fill out > the simplest of forms.So I fear for the loss also. I > am not a child and believe me it is very hard to > except. I do childrens books, trying to keep up some > part of my brain working. > > --- Laurie Fitzgerald laurie.fitzgerald@...> > > wrote: > > > MQ > > > > When the number of normally functioning mitochondria > > goes below that > > level needed to function properly, then that organ > > system begins to > > mal-function. This is my belief - taking the mito > > cocktail (lots of > > antioxidents) helps to protect the good mitochondria > > from being > > damaged and maintains function longer. > > > > Mental retardation is more apt to be found in > > children as far as I > > understand. There are those with specific defects > > (in adults and > > children) that are more apt to get dementia. Since > > the aging process > > is due to damage and inadequate functioning of the > > mitochondria, early > > aging of the brain is possible. Some of us have > > problems with finding > > the word we want to use as easily as we would like, > > but the rest of > > our brains work fine. Loosing my mental functioning > > is one of my > > greatest fears. > > > > laurie > > > > On 3/3/06, medical question mark > > medical_questionmark@...> wrote: > > > > > > > > > Thanks a lot for answering my questions, > > > I will be asking doctors in India, if I could > > benefit from a skin and > > > muscle biopsy. > > > > > > I have also read that mitochondrial diseases > > can affect any organ any > > > time. How true is that? > > > > > > Also, that many mito diseases are characterizd > > by mental retardation and > > > cognitive involvement . could we say that one > > day my intellectual > > > capabilities may be affected. > > > > > > Are your girls still studying or have they > > entered the worforce. > > > > > > I am a writer-working from home. Please give my > > best to youdaughters . > > > > > > I will be praying for them. > > > > > > Regards > > > Mq > > > > > > Joanne Kocourek servedogmom@...> wrote: > > The diagnosis was obtained > > > by skin fibroblast studies and fresh muscle > > biopsies. (Multiple). > > > > > > > > > My girls take the following: Coenzyme Q10 (very > > high doses), Carnitor, Vit > > > E, High dose riboflavin, B50 Complex, Vit C, > > Niacinamide, Selenium, Alpha > > > Lipoic Acid, a mulitvitamin, and multiple meds to > > address each of the > > > affected organ systems. This is considered a > > component of alternative > > > medicine. Over time we've tried guided imagry, > > biofeedback, massage, etc > > > without any improvement. > > > > > > They are on a high, complex carb, very low fat > > diet with 5-6 smaller meals > > > each day and lots of oral fluids (3,000-3500cc). > > > > > > AS far as I know the genetics studies are being > > done in Atlanta, UC Irvine, > > > possibly Columbia and UCSF. > > > > > > medical question mark > > medical_questionmark@...> wrote: > > > How did the doctors conclude that your girls > > had abnormalities in > > > Complex I, III, IV and ANT function. What tests > > were performed? > > > > > > What kind ofvitamins and other supplements do > > your girls take. > > > > > > > > > I did not have much problem with my vision > > until recently, when I went > > > on a low carb diet. Prior to this I had suffered > > from an eye infection, it > > > is only now that I have come to know that mito > > disease sufferers should eat > > > three regular meals. > > > > > > Can you let me know the names of institutes in > > US, where such genetic > > > analysis is done on a research basis, > > > > > > Have your girls ever tried any alternative > > medicine > > > > > > > > > > > > > > > > > > Joanne Kocourek (mom to , lies, and > > ) > > > visit us at: > > http://www.caringbridge.org/il/annakris > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > > > 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 12, 2006 Report Share Posted March 12, 2006 Hello everyone, It is Wanda from Australia here, I haven't posted lately due to very ill health and 2 Hospital visits. I am so new to these groups, I marvel at how you can banter around your great knowledge for the benefit of us still learning. My Mito is progressing and has been like this for 6 months now. I have had 3 Muscle biopsies (2 needle and one large muscle) My diagnosis has alterd over 6 1/2 years due to technology in the DNA testing procedures. I was given the initial diagnosis of Mitochondrial Myopathy in 1998 but since seeing my latest Neurologist and having a new biopsy she has told me it is Mitochondrial Cytopathy. I have seen my test and it said numerous cox negative fibres and " ragged red " fibres with type 2B fibre atrophy. COX1gene-nucleotide position 5904-7445 reveals a G-A change in position 6261 and C-T change in position 7028. Cytochrome B Oxidase deficiency. Some fresh and some frozen testing was done and is still being done on frozen muscle in the future. To a layman it is so confusing being that their are so many variations of this disease. All I know is that I now need a shower chair a walking stick and a wheelchair for outside journeys. I do hope that we can get to know each other in the future and I hope to hear from you all,and if anyone else has similar testing results I would love to hear from you. Stay safe Regards Wanda > >Reply-To: >To: >Subject: Re: please help >Date: Thu, 2 Mar 2006 16:23:14 -0800 (PST) > >The diagnosis was obtained by skin fibroblast studies and fresh muscle >biopsies. (Multiple). > >My girls take the following: Coenzyme Q10 (very high doses), Carnitor, Vit >E, High dose riboflavin, B50 Complex, Vit C, Niacinamide, Selenium, Alpha >Lipoic Acid, a mulitvitamin, and multiple meds to address each of the >affected organ systems. This is considered a component of alternative >medicine. Over time we've tried guided imagry, biofeedback, massage, etc >without any improvement. > >They are on a high, complex carb, very low fat diet with 5-6 smaller meals >each day and lots of oral fluids (3,000-3500cc). > >AS far as I know the genetics studies are being done in Atlanta, UC Irvine, >possibly Columbia and UCSF. > >medical question mark medical_questionmark@...> wrote: > How did the doctors conclude that your girls had abnormalities in >Complex I, III, IV and ANT function. What tests were performed? > >What kind ofvitamins and other supplements do your girls take. > > > I did not have much problem with my vision until recently, when I went >on a low carb diet. Prior to this I had suffered from an eye infection, it >is only now that I have come to know that mito disease sufferers should eat >three regular meals. > >Can you let me know the names of institutes in US, where such genetic >analysis is done on a research basis, > >Have your girls ever tried any alternative medicine > > > > > >Joanne Kocourek (mom to , lies, and ) >visit us at: http://www.caringbridge.org/il/annakris > > Quote Link to comment Share on other sites More sharing options...
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