Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 I am a 40 year old female recently confirmed to have Mitochondrial Myopathy-Complex I (2 separate muscle biopsies). The specialist says that 25% of the people with Complex I, will also have a secondary fatty acid disorder. I have this as well. I have been trying to find out my problem for about three years. Now that I know what it is (I'm not crazy!!), I am trying to find some other adults who know what I am going through. It is such an " unknown " condition, the doctors here in Tennessee don't know much about it. We do not have a support group in this state either, so I have been searching on-line to get some answers. I have fatigue and muscle pain. The problem is that I also have a bad back. For some reason, I have accelerated degeneration in my spine. It is sometimes hard for me to determine what I should be blaming on the Mito disease and what is really back symptoms. My Mito specialist in Atlanta, GA (Dr. Shoffner) is really concerned about my back problems and says he wants a neurosurgeon to take a serious look at my back. He thinks that it is as serious as the Mito disease. I would just like to talk to someone to see what they are doing to help themselves. I am taking CoQ10, Carnitine and Riboflavin. He wants me to take MCT oil as well. It is so expensive and insurance will not cover any of these supplements. I have read a lot on-line about mito disease. Most of it refers to pediatric cases and is really scary! Can someone give me an idea of what I might be facing in the future? I used to be extrememely active and now I have a hard time getting a gallon of milk out ot the fridge. Any information would be greatly appreciated! Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 Hi Angie! We are glad to have you here. Welcome to Mitoldies! There is an organization called the United Mitochondrial Disease Foundation. You can visit their website at http://www.umdf.org . They have good information about the different types of Mitochondrial Myopathy on there. Another resource is the Muscular Dystrophy Association. Mito is one of the many neuromuscular diseases that the MDA treats. You can visit their website at http://www.mdausa.org . They have clinics in many states. I am glad to hear that you were able to be seen by Dr. Shoffner. He has a fine reputation. As far as supplements go, some people get theirs from http://www.epic4health.com . Others get them over the counter at the drug store. Some of the others here can probably give you good ideas on where to get supplements and who has the best prices. Welcome to the group! There are people on here with lots of knowledge, and they always seem to be willing to answer questions and help each other out. Keep Smiling, Nikki > I am a 40 year old female recently confirmed to have Mitochondrial > Myopathy-Complex I (2 separate muscle biopsies). The specialist says > that 25% of the people with Complex I, will also have a secondary > fatty acid disorder. I have this as well. I have been trying to find > out my problem for about three years. Now that I know what it is > (I'm not crazy!!), I am trying to find some other adults who know > what I am going through. It is such an " unknown " condition, the > doctors here in Tennessee don't know much about it. We do not have a > support group in this state either, so I have been searching on- line > to get some answers. I have fatigue and muscle pain. The problem is > that I also have a bad back. For some reason, I have accelerated > degeneration in my spine. It is sometimes hard for me to determine > what I should be blaming on the Mito disease and what is really back > symptoms. My Mito specialist in Atlanta, GA (Dr. Shoffner) is > really concerned about my back problems and says he wants a > neurosurgeon to take a serious look at my back. He thinks that it is > as serious as the Mito disease. I would just like to talk to someone > to see what they are doing to help themselves. I am taking CoQ10, > Carnitine and Riboflavin. He wants me to take MCT oil as well. It is > so expensive and insurance will not cover any of these supplements. > I have read a lot on-line about mito disease. Most of it refers to > pediatric cases and is really scary! Can someone give me an idea of > what I might be facing in the future? I used to be extrememely > active and now I have a hard time getting a gallon of milk out ot > the fridge. Any information would be greatly appreciated! > > Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2004 Report Share Posted June 25, 2004 Angie Me again! I am 62, but was diagnosed by Dr. Shoffner when in my 50s. My symptoms became a concern when I was about 40. I have a Complex I defect with a functional II problem and possibility of a Complex III defect. I was tried on the MCT oil before an accurate diagnosis and it did nothing for the condition and caused some problems. This is not to say that it might not help you. I also tried a high fat diet and low fat diet and neither of these helped. According to Dr. Cohen, logic would say that if Complex I is not working, then adding more fuel at II (fatty acids) would help, but he has found very few that have had this help. Just another confusing part of mito. I use the Tishcon Q-gel (it is more bio-available) and saw improvement with some symptoms after getting it at a high dose. I also take Carnitor which makes the Q-gel work better and the Q-gel makes the Carnitor work better. Carnitor (by Sigma Tau) is a prescription medication. If you can't get it because it is out of formulary, then you need to go through the hoops to get it covered. My sister , on this list, has done this several times and I'm sure she can give you some tips. It is much too expensive to not have insurance pay for it. This is getting long, but I will tell you that even with the supplements, my condition has progressed, but I am still working and doing most of the things I want to do, but using adaptive equipment and getting things like house cleaning and yard work done much more slowly than before. In most cases adult onset mito progresses much more slowly than child onset. laurie > > Reply-To: > Date: Fri, 25 Jun 2004 03:47:12 -0000 > To: > Subject: Newly Diagnosed > > I am a 40 year old female recently confirmed to have Mitochondrial > Myopathy-Complex I (2 separate muscle biopsies). The specialist says > that 25% of the people with Complex I, will also have a secondary > fatty acid disorder. I have this as well. I have been trying to find > out my problem for about three years. Now that I know what it is > (I'm not crazy!!), I am trying to find some other adults who know > what I am going through. It is such an " unknown " condition, the > doctors here in Tennessee don't know much about it. We do not have a > support group in this state either, so I have been searching on-line > to get some answers. I have fatigue and muscle pain. The problem is > that I also have a bad back. For some reason, I have accelerated > degeneration in my spine. It is sometimes hard for me to determine > what I should be blaming on the Mito disease and what is really back > symptoms. My Mito specialist in Atlanta, GA (Dr. Shoffner) is > really concerned about my back problems and says he wants a > neurosurgeon to take a serious look at my back. He thinks that it is > as serious as the Mito disease. I would just like to talk to someone > to see what they are doing to help themselves. I am taking CoQ10, > Carnitine and Riboflavin. He wants me to take MCT oil as well. It is > so expensive and insurance will not cover any of these supplements. > I have read a lot on-line about mito disease. Most of it refers to > pediatric cases and is really scary! Can someone give me an idea of > what I might be facing in the future? I used to be extrememely > active and now I have a hard time getting a gallon of milk out ot > the fridge. Any information would be greatly appreciated! > > Angie > > > > > > > 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 June 25, 2004 Report Share Posted June 25, 2004 Hi Angie, I too wish to welcome you to Mitoldies although I'm sorry that you have the need to be here. You've joined us at a very sad time when we are paying respects to Mattie Stepanek who was the Goodwill Ambassador for the MDA from 2002-2004. This disease had not received much recognition until Mattie came along and his wisdom and faith has been acknowledged by some very influential people. We don't normally post this much about a child but Mattie was really a hero for adults and children dealing with any form of MD but mostly Mitochondrial Disease. It is unfortunate that he couldn't live out his dreams but he did accomplish more in his 13 years than most people ever do. A little info on me. I'm now 60 (soon to be 61 but not going there until I have to). In 1997, I started having serious issues with the disease although I had had many signs that I ignored thru the years. The doctors were looking for Lupus, Lyme, Fybro, CFS, Auto Immune disorders, etc. They had no answers but I was going deaf and very ill with no muscle strength and very limited mobility. It was a rough time. At the same time, my oldest daughter was dealing with her own medical problems in another state. My youngest daughter had some of her own but both daughters were seeing problems with their children that no one could explain. My oldest daughter found this disease on the internet (I had found it a year before and brushed it off saying we can't have that). She followed thru with this find and found her way to Dr Shoffner for the biopsy which was positive for Mitochondrial Disease. Since that diagnosis, one by one, family members have been diagosed by test results and symptoms. Right now, we have 11 positive living diagnoses in our family and it is felt that my Mother, my aunt and my Grandmother (all deceased) had this. I also am sure that my 2 sisters have it based on their symptoms although they have not gotten a diagnosis. I lost brothers in infancy and we do not know the cause. So, the disease can be passed on but not always. That is what you need to remember. Until you see symptoms in other family members, try not to worry about it. About the mito cocktail - I can't agree with you more about the expense. None of mine (except for Carnitor) is covered by insurance. I pay a considerable amount of money out of pocket to have them. My monthly outlay for supplements and meds is higher than a normal mortgage payment. I tried to go without them though and noticed that my symptoms immediately escalated including a loss of more hearing. This made me realize the need. It doesn't work that way with everyone though. Some don't notice this need and don't have to take the supplements so start off slowly and increase to the level Dr Shoffner suggested and see if you notice a change but give it time. Most Mito doctors that I have spoken to have said it takes a minimum of 3 months and normally 6 months to notice the difference. I have a lot of adaptive equipment and I'm needing this more than ever now. The equipment saves my energy for doing other things. I've been unable to work since 1999 and left a wonderful career which was quite painful for me. Quality of life is the main issue with adult onset Mitochondrial Disease. You need to take every step possible to maintain that. By finding us on Mitoldies, you have found the path to help you do that. Keep posting your questions and concerns. You've just joined a very large family. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2004 Report Share Posted June 25, 2004 Angie, Welcome to Mitoldies. I think you will find a wealth of knowledge here along with very caring people. I am 27 and was diagnosed with Complex IV, COX deficiency, possible Complex I and III at the age of 18. I am in a situation similar to yours, as there are not many doctors in Iowa that know about mitochondrial disorders. I am a special education teacher, but had to " retire " at age 25, due to stroke like episodes. I now work between 12-15 hours a week as an At Risk reading associate. I, along with many others in this group, require some assistive devices. I use a walker/forearm crutches and a wheelchair. I just got a power chair in January. I feel as if the devices have helped me conserve energy and continue to live a great life. There has been no one else in my family diagnosed " officially " with a mitochondrial disorder. I do think that my maternal grandmother had it, as we actually started showing symptoms of it at the same time. My aunts, mother and sister have some health issues, but no diagnosis. I hope you find the support and caring here that I have. Smiles, a On Fri, 25 Jun 2004 03:47:12 -0000 " peanut2goob " peanut2goob@...> writes: I am a 40 year old female recently confirmed to have Mitochondrial Myopathy-Complex I (2 separate muscle biopsies). The specialist says that 25% of the people with Complex I, will also have a secondary fatty acid disorder. I have this as well. I have been trying to find out my problem for about three years. Now that I know what it is (I'm not crazy!!), I am trying to find some other adults who know what I am going through. It is such an " unknown " condition, the doctors here in Tennessee don't know much about it. We do not have a support group in this state either, so I have been searching on-line to get some answers. I have fatigue and muscle pain. The problem is that I also have a bad back. For some reason, I have accelerated degeneration in my spine. It is sometimes hard for me to determine what I should be blaming on the Mito disease and what is really back symptoms. My Mito specialist in Atlanta, GA (Dr. Shoffner) is really concerned about my back problems and says he wants a neurosurgeon to take a serious look at my back. He thinks that it is as serious as the Mito disease. I would just like to talk to someone to see what they are doing to help themselves. I am taking CoQ10, Carnitine and Riboflavin. He wants me to take MCT oil as well. It is so expensive and insurance will not cover any of these supplements. I have read a lot on-line about mito disease. Most of it refers to pediatric cases and is really scary! Can someone give me an idea of what I might be facing in the future? I used to be extrememely active and now I have a hard time getting a gallon of milk out ot the fridge. Any information would be greatly appreciated! Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2004 Report Share Posted June 26, 2004 Angie ... I am so sorry to hear you are going through so much ... I am also new to all of this so I may not be a great source of what the future may hold for you in relation to this cruel disease ... but I can tell you that I am sending you healing thoughts and I hope that you are able to find a treatment that will help you with all that you are going through ... and I am also willing to learn about this condition with you and share any new information that I come across either from things I have read or from my Rheumatologist ... Brightest Blessings ... ~ Gwenni ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2004 Report Share Posted June 26, 2004 Alice ... Thank you so much for what you said ... I really needed to hear alot of that ... I have been so worried about the possibility that I may have passed this on to my boys ... and thankfully they say that it is passed on by the mother so I am hopeful that my future grandchildren won't have to deal with this on account of me passing a recessive gene to my boys ... you have such an eloquent way of writing and it really touched me ... I am so sorry to hear that you and so many of your loved ones have to live with this disease and my thoughts are with you and your family in that regard ... Thank you for the information on the " mito cocktail " ... I will be sure to ask my doctor about that to see if he thinks it would help with my situation ... I also have had to leave a career that I worked very hard for and loved very dearly back in March 2000 when I had come to the conclusion that my fatigue, pain and weakness was a risk to not only my safety at work but to the safety of those I was caring for as I was a Certified Nursing Assistant at a nursing home ... I sat in my bosses office and talked with her for three hours and even got to the point where she and I broke down crying because I had to make the choice to leave my beloved residents and co-workers that had become like family to me ... it was one of the hardest things I had ever had to do and all of this happened just after my divorce from my husband who had been cheating on me and got the woman pregnant to which he left me and our two boys for her and the child they created ... so with losing my marriage, my health and then my career I had felt like my whole world had been turned upside down ... and just when I was finally back on my feet emotionally and ready to try to go back to college to be able to find a career I could do with my limitations because of the FMS/MPS Complex ... I had to find out that I had another disease to battle with ... and actually now that I have really had time to think about it I wonder if it really had been Mitochondrial Myopathy the whole time and my FMS/MPS Complex diagnosis is really a mistake ... but from what my Rheumatologist had told me at my last appointment it seems he believes that I am dealing with both conditions ... though I can't help but wonder about that ... again thank you all so much for being here ... and thank you Alice for all your words of hope and encouragement ... you are truly a fine lady ~ Gwenni ~ Re: Newly Diagnosed Hi Angie, I too wish to welcome you to Mitoldies although I'm sorry that you have the need to be here. You've joined us at a very sad time when we are paying respects to Mattie Stepanek who was the Goodwill Ambassador for the MDA from 2002-2004. This disease had not received much recognition until Mattie came along and his wisdom and faith has been acknowledged by some very influential people. We don't normally post this much about a child but Mattie was really a hero for adults and children dealing with any form of MD but mostly Mitochondrial Disease. It is unfortunate that he couldn't live out his dreams but he did accomplish more in his 13 years than most people ever do. A little info on me. I'm now 60 (soon to be 61 but not going there until I have to). In 1997, I started having serious issues with the disease although I had had many signs that I ignored thru the years. The doctors were looking for Lupus, Lyme, Fybro, CFS, Auto Immune disorders, etc. They had no answers but I was going deaf and very ill with no muscle strength and very limited mobility. It was a rough time. At the same time, my oldest daughter was dealing with her own medical problems in another state. My youngest daughter had some of her own but both daughters were seeing problems with their children that no one could explain. My oldest daughter found this disease on the internet (I had found it a year before and brushed it off saying we can't have that). She followed thru with this find and found her way to Dr Shoffner for the biopsy which was positive for Mitochondrial Disease. Since that diagnosis, one by one, family members have been diagosed by test results and symptoms. Right now, we have 11 positive living diagnoses in our family and it is felt that my Mother, my aunt and my Grandmother (all deceased) had this. I also am sure that my 2 sisters have it based on their symptoms although they have not gotten a diagnosis. I lost brothers in infancy and we do not know the cause. So, the disease can be passed on but not always. That is what you need to remember. Until you see symptoms in other family members, try not to worry about it. About the mito cocktail - I can't agree with you more about the expense. None of mine (except for Carnitor) is covered by insurance. I pay a considerable amount of money out of pocket to have them. My monthly outlay for supplements and meds is higher than a normal mortgage payment. I tried to go without them though and noticed that my symptoms immediately escalated including a loss of more hearing. This made me realize the need. It doesn't work that way with everyone though. Some don't notice this need and don't have to take the supplements so start off slowly and increase to the level Dr Shoffner suggested and see if you notice a change but give it time. Most Mito doctors that I have spoken to have said it takes a minimum of 3 months and normally 6 months to notice the difference. I have a lot of adaptive equipment and I'm needing this more than ever now. The equipment saves my energy for doing other things. I've been unable to work since 1999 and left a wonderful career which was quite painful for me. Quality of life is the main issue with adult onset Mitochondrial Disease. You need to take every step possible to maintain that. By finding us on Mitoldies, you have found the path to help you do that. Keep posting your questions and concerns. You've just joined a very large family. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2004 Report Share Posted June 26, 2004 Angie, Gwenni welcome to our family. you have found a great place. we are a great source of support and friendship and knowledge. sorry for the reason you are here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2004 Report Share Posted June 26, 2004 Gwenni, CFS and Fibro. are common mis-dx. of mito. You are not alone there at all. Mito is a very new field and the experts, which there are way too few of, don't know if the damaged mito causes some of our other diseases, or if other disease caused our damaged mito. It is a " which came first, the chicken or the egg? " kind of thing. Please know that you now have an even larger " family " to share your worries and triumphs with. When you become a member of Mitoldies, you are adopted into this big wonderful family. The reason we are all here is not wonderful, but I have not met a more caring and compassionate group of people in my life. Gwenni wrote: >Alice ... > >Thank you so much for what you said ... I really needed to hear alot of that .... I have been so worried about the possibility that I may have passed this on to my boys ... and thankfully they say that it is passed on by the mother so I am hopeful that my future grandchildren won't have to deal with this on account of me passing a recessive gene to my boys ... you have such an eloquent way of writing and it really touched me ... I am so sorry to hear that you and so many of your loved ones have to live with this disease and my thoughts are with you and your family in that regard ... Thank you for the information on the " mito cocktail " ... I will be sure to ask my doctor about that to see if he thinks it would help with my situation ... I also have had to leave a career that I worked very hard for and loved very dearly back in March 2000 when I had come to the conclusion that my fatigue, pain and weakness was a risk to not only my safety at work but to the safety of those I was caring for as I was a Certified Nursing Assistant at a nursing home ... I sat in my bosses office and talked with her for three hours and even got to the point where she and I broke down crying because I had to make the choice to leave my beloved residents and co-workers that had become like family to me ... it was one of the hardest things I had ever had to do and all of this happened just after my divorce from my husband who had been cheating on me and got the woman pregnant to which he left me and our two boys for her and the child they created ... so with losing my marriage, my health and then my career I had felt like my whole world had been turned upside down ... and just when I was finally back on my feet emotionally and ready to try to go back to college to be able to find a career I could do with my limitations because of the FMS/MPS Complex ... I had to find out that I had another disease to battle with ... and actually now that I have really had time to think about it I wonder if it really had been Mitochondrial Myopathy ! >the whole time and my FMS/MPS Complex diagnosis is really a mistake ... but from what my Rheumatologist had told me at my last appointment it seems he believes that I am dealing with both conditions ... though I can't help but wonder about that ... again thank you all so much for being here ... and thank you Alice for all your words of hope and encouragement ... you are truly a fine lady > >~ Gwenni ~ > Re: Newly Diagnosed > > > > Hi Angie, > > I too wish to welcome you to Mitoldies although I'm sorry that you have the need to be here. You've joined us at a very sad time when we are paying respects to Mattie Stepanek who was the Goodwill Ambassador for the MDA from 2002-2004. This disease had not received much recognition until Mattie came along and his wisdom and faith has been acknowledged by some very influential people. We don't normally post this much about a child but Mattie was really a hero for adults and children dealing with any form of MD but mostly Mitochondrial Disease. It is unfortunate that he couldn't live out his dreams but he did accomplish more in his 13 years than most people ever do. > > A little info on me. I'm now 60 (soon to be 61 but not going there until I have to). In 1997, I started having serious issues with the disease although I had had many signs that I ignored thru the years. The doctors were looking for Lupus, Lyme, Fybro, CFS, Auto Immune disorders, etc. They had no answers but I was going deaf and very ill with no muscle strength and very limited mobility. It was a rough time. > > At the same time, my oldest daughter was dealing with her own medical problems in another state. My youngest daughter had some of her own but both daughters were seeing problems with their children that no one could explain. My oldest daughter found this disease on the internet (I had found it a year before and brushed it off saying we can't have that). She followed thru with this find and found her way to Dr Shoffner for the biopsy which was positive for Mitochondrial Disease. Since that diagnosis, one by one, family members have been diagosed by test results and symptoms. Right now, we have 11 positive living diagnoses in our family and it is felt that my Mother, my aunt and my Grandmother (all deceased) had this. I also am sure that my 2 sisters have it based on their symptoms although they have not gotten a diagnosis. I lost brothers in infancy and we do not know the cause. > So, the disease can be passed on but not always. That is what you need to remember. Until you see symptoms in other family members, try not to worry about it. > > About the mito cocktail - I can't agree with you more about the expense. None of mine (except for Carnitor) is covered by insurance. I pay a considerable amount of money out of pocket to have them. My monthly outlay for supplements and meds is higher than a normal mortgage payment. I tried to go without them though and noticed that my symptoms immediately escalated including a loss of more hearing. This made me realize the need. It doesn't work that way with everyone though. Some don't notice this need and don't have to take the supplements so start off slowly and increase to the level Dr > Shoffner suggested and see if you notice a change but give it time. Most Mito doctors that I have spoken to have said it takes a minimum of 3 months and normally 6 months to notice the difference. > > I have a lot of adaptive equipment and I'm needing this more than ever now. The equipment saves my energy for doing other things. I've been unable to work since 1999 and left a wonderful career which was quite painful for me. > > Quality of life is the main issue with adult onset Mitochondrial Disease. You need to take every step possible to maintain that. By finding us on Mitoldies, you have found the path to help you do that. Keep posting your questions and concerns. You've just joined a very large family. > > Alice > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2004 Report Share Posted June 26, 2004 Gwenni, I'm glad you were able to gain some comfort from my post. I wanted to tell you that it's important to keep in mind that this is a relatively new area in medicine but if they are correct, if this is maternally inherited in your family, you can pass it to your boys but they are not supposed to be able to pass it on to their children. It's also possible that your boys don't have Mito. Unless they show symptoms that need medical intervention, I would not worry about it and let them live their lives normally. I see the lives of children so filled with medical appointments because of this disease that it really saddens me. They need to have a normal childhood. Given a diagnosis of Mito, this all changes and in my opinion - not for the better. There's one specialist after the other and all they want is to be like all the other kids. I strongly believe they should be allowed to do just that. I'm glad you found this group as I don't think you will find more caring and understanding people than the members of this list. We all do our best to answer and support our " mito family " but sometimes you may notice we are slow to reply. Since we are all dealing with this illness, we have our good days and our bad days but we're always a day or two away. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2004 Report Share Posted June 26, 2004 ... That is kind of what I had suspected myself and I intend on asking my Rheumatologist more about it when I see him next week ... and as far as which came first that is a good question in my case because my very first symptoms of severe fatigue, weakness and pain came on just after I had a severe back injury at work (as a Certified Nursing Assistant) while I was lifting a resident with my co-worker and his knees buckled under him and it caused me to have pulled all of my postural muscles in my back and also dislocated vertebre in my neck and lower back and after I went through 2 months of physical therapy I was able to return to work and that is when the fatigue, weakness and pain set in and because my mom has RA I had thought that is what was wrong with me and went to see my doctor and got referred to a Rheumatoloist and found out I had FMS/MPS complex ... Thank you so much for your warm words and I can tell you I already feel welcomed by this wonderful group of people ... Thank you all for letting me be a part of this " family " ~ Gwenni ~ Re: Newly Diagnosed Gwenni, CFS and Fibro. are common mis-dx. of mito. You are not alone there at all. Mito is a very new field and the experts, which there are way too few of, don't know if the damaged mito causes some of our other diseases, or if other disease caused our damaged mito. It is a " which came first, the chicken or the egg? " kind of thing. Please know that you now have an even larger " family " to share your worries and triumphs with. When you become a member of Mitoldies, you are adopted into this big wonderful family. The reason we are all here is not wonderful, but I have not met a more caring and compassionate group of people in my life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2004 Report Share Posted June 26, 2004 ... Thanks for the welcome to the group ... I am also sorry that you have to live with this disease also ... at least now I have found others who can understand where I am coming from and can in turn be there for those of you here ... Hugs ~ Gwenni ~ Re: Newly Diagnosed Angie, Gwenni welcome to our family. you have found a great place. we are a great source of support and friendship and knowledge. sorry for the reason you are here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2004 Report Share Posted June 26, 2004 Alice ... All three of my boys aren't showing any symptoms that I have so that is a great relief to me and they are all healthy and active for which I feel deeply blessed for those reasons ... thanks for your encouragement for me to not worry and just let them be unless some symptoms develop ... I am also one for advocating for children to be allowed to just be kids and it breaks my heart to know that there are so many children that have to endure so much medical treatment for diseases that they were born with or aquired ... I agree that this is a very supportive and caring group of people and I am honored to be a part of it ... and I do understand that we all will have are bad and good days as I have that same situation myself so it isn't a problem that others need time to respond to posts .... it is simply conforting enough to know that you all are there and that I now have a place to turn when I have questions or concerns that only someone who is living with this disease woul know the answers to ... and also so I can be there for all of you in return Brightest Blessings ... ~ Gwenni ~ Re: Newly Diagnosed Gwenni, I'm glad you were able to gain some comfort from my post. I wanted to tell you that it's important to keep in mind that this is a relatively new area in medicine but if they are correct, if this is maternally inherited in your family, you can pass it to your boys but they are not supposed to be able to pass it on to their children. It's also possible that your boys don't have Mito. Unless they show symptoms that need medical intervention, I would not worry about it and let them live their lives normally. I see the lives of children so filled with medical appointments because of this disease that it really saddens me. They need to have a normal childhood. Given a diagnosis of Mito, this all changes and in my opinion - not for the better. There's one specialist after the other and all they want is to be like all the other kids. I strongly believe they should be allowed to do just that. I'm glad you found this group as I don't think you will find more caring and understanding people than the members of this list. We all do our best to answer and support our " mito family " but sometimes you may notice we are slow to reply. Since we are all dealing with this illness, we have our good days and our bad days but we're always a day or two away. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2004 Report Share Posted June 26, 2004 Stress and/or illness if very often what triggers symptoms in mito. For myself, I got really bad during and right after the birth of my daughter. THAT is stress on the body in one of the biggest ways! Gwenni wrote: > ... > >That is kind of what I had suspected myself and I intend on asking my Rheumatologist more about it when I see him next week ... and as far as which came first that is a good question in my case because my very first symptoms of severe fatigue, weakness and pain came on just after I had a severe back injury at work (as a Certified Nursing Assistant) while I was lifting a resident with my co-worker and his knees buckled under him and it caused me to have pulled all of my postural muscles in my back and also dislocated vertebre in my neck and lower back and after I went through 2 months of physical therapy I was able to return to work and that is when the fatigue, weakness and pain set in and because my mom has RA I had thought that is what was wrong with me and went to see my doctor and got referred to a Rheumatoloist and found out I had FMS/MPS complex ... Thank you so much for your warm words and I can tell you I already feel welcomed by this wonderful group of people ... Thank you all for letting me be a part of this " family " > >~ Gwenni ~ > Re: Newly Diagnosed > > > Gwenni, > > CFS and Fibro. are common mis-dx. of mito. You are not alone there at > all. Mito is a very new field and the experts, which there are way too > few of, don't know if the damaged mito causes some of our other > diseases, or if other disease caused our damaged mito. It is a " which > came first, the chicken or the egg? " kind of thing. > > Please know that you now have an even larger " family " to share your > worries and triumphs with. When you become a member of Mitoldies, you > are adopted into this big wonderful family. The reason we are all here > is not wonderful, but I have not met a more caring and compassionate > group of people in my life. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2004 Report Share Posted June 26, 2004 Regarding stress - Everytime I had a child - I had a set back of some sort. I didn't at the time think it was anything different than anyone else. Funny what I know today. The real turning point for me was a high level, high stress job that required my attention just about 24/7. I worked 12-14 hour days and came home with a laptop. My weekends were spent some in the office and the rest on the laptop at home. I lived the job. It destroyed what health I had. I wouldn't change it because I loved my job. I just wish I had the health to keep up with it. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2004 Report Share Posted June 26, 2004 Hi Angie, Nice to meet you!! Welcome to a great group. Lots of information and wonderful people here. It will become your Family away from your Family. As we all know that sometimes Family judges but this Family doesn't judge, we are here to give information, support, guideness, hope, and friendship. I am a 44 yr.old diagnosed(in 1995) with Mitchondrial Encephalomyopathy. It took me almost 10 yrs. to get a diagnosis. You have a great doctor and if he is that concerned about your back problems and wants you to see a neurosurgeon than by all means follow thru. Did you have some kind of an accident that messed up your back or do you think it is being caused by the Mito? I take the Mito Cocktail and do pretty well on it, although for the last 8 months I have been sleeping for 18 to 20 hours a day. It is starting to get a little bit better, but still sleeping for at least 18 hours a day. So I understand your fatigue, and also have the muscle pain plus alot of other symptoms. It is hard for some to stay on the Mito Cocktail due to the cost. And insurance doesn't cover most of the supplements. That makes it harder b/c of the cost but in the long run if you are benefiting from the supplements, then some thing in the budget has to go so one can afford the supplements that helps us to function on a daily basis. Do you also see a Neurologist for the times when you don't see Dr. Shoffner? Are you using a power scooter or a power wheelchair yet? It is very hard to estimate to what degree the disease will progress in each individual. Some only have mild symptoms while others are in constant pain and their symptoms get worse all the time. Glad you found us, Welcome to our group!! Hugs, Ann-Marie Newly Diagnosed I am a 40 year old female recently confirmed to have Mitochondrial Myopathy-Complex I (2 separate muscle biopsies). The specialist says that 25% of the people with Complex I, will also have a secondary fatty acid disorder. I have this as well. I have been trying to find out my problem for about three years. Now that I know what it is (I'm not crazy!!), I am trying to find some other adults who know what I am going through. It is such an " unknown " condition, the doctors here in Tennessee don't know much about it. We do not have a support group in this state either, so I have been searching on-line to get some answers. I have fatigue and muscle pain. The problem is that I also have a bad back. For some reason, I have accelerated degeneration in my spine. It is sometimes hard for me to determine what I should be blaming on the Mito disease and what is really back symptoms. My Mito specialist in Atlanta, GA (Dr. Shoffner) is really concerned about my back problems and says he wants a neurosurgeon to take a serious look at my back. He thinks that it is as serious as the Mito disease. I would just like to talk to someone to see what they are doing to help themselves. I am taking CoQ10, Carnitine and Riboflavin. He wants me to take MCT oil as well. It is so expensive and insurance will not cover any of these supplements. I have read a lot on-line about mito disease. Most of it refers to pediatric cases and is really scary! Can someone give me an idea of what I might be facing in the future? I used to be extrememely active and now I have a hard time getting a gallon of milk out ot the fridge. Any information would be greatly appreciated! Angie 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 June 28, 2004 Report Share Posted June 28, 2004 Yeah 2 month long crashes were the norm for a year or two after a child, then about the time I would recover, I would have another one! haha I actually have gone 8 years now without giving birth, and havent had the really severe crashes in years now. Gee wonder why? hmmmmmmm > > Regarding stress - Everytime I had a child - I had a set back of some sort. I didn't at the time think it was anything different than anyone else. Funny what I know today. > > The real turning point for me was a high level, high stress job that required my attention just about 24/7. I worked 12-14 hour days and came home with a laptop. My weekends were spent some in the office and the rest on the laptop at home. I lived the job. It destroyed what health I had. I wouldn't change it because I loved my job. I just wish I had the health to keep up with it. > > Alice > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 We mean all the things we take, USUALLY including coenzymeQ, carnitine, and certain b vitamins, and often other things as well. Like I said, usually. We all vary somewhat in what we take. For instance, carnitine doesnt help me at all, as a matter of fact, I get sick on it. I do best on massive amounts of coenzymeq10, b vitamins, vitamin c, selenium, zinc, potassium, vitamin e, and sometimes other things as well. >> I am still paying for all my supplements out of pocket. I've been hearing about Carnitor and Q-gel and possibley insurance paying for them. Do yo know anything about them? Also, when you say " Mito Cocktail " , do you mean all the things you take or do you have something that is combined? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2004 Report Share Posted July 6, 2004 I had no problem getting the carnitor covered by insurance--it is by prescription. I get the Qgel covered under orphan drug status. Some get it covered under durable medical goods. It is a fight to get it covered. They will not cover the rest of the vitamins for me--some other insurance companies may. Janet Sample Re: Newly Diagnosed > We mean all the things we take, USUALLY including coenzymeQ, carnitine, and > certain b vitamins, and often other things as well. Like I said, usually. > We all vary somewhat in what we take. For instance, carnitine doesnt help > me at all, as a matter of fact, I get sick on it. I do best on massive > amounts of coenzymeq10, b vitamins, vitamin c, selenium, zinc, potassium, > vitamin e, and sometimes other things as well. > > > > > >> I am still paying for all my supplements out of pocket. I've been hearing > about Carnitor and Q-gel and possibley insurance paying for them. Do yo know > anything about them? Also, when you say " Mito Cocktail " , do you mean all the > things you take or do you have something that is combined? > > > > > > > > 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 July 6, 2004 Report Share Posted July 6, 2004 > Carnitor is by prescription only that is why they cover it--it is > by Sigma Tau and is supposed to be a pharmaceutical grade carnitine. Carnitor is a carnitine self-salt (inner salt) - that is, positive and negative charged groups on the carnitine molecules, no other counter ions. This is the way most amino acids are thought to occur, a + charge on one side and a - charge on the other. That is not available over the counter. What are available are things like carnitine tartrate (combined with tartaric acid to make a salt) and carnitine fumarate (combined with fumaric acid to make a salt). Some people have found success with acetyl carnitine, again somewhat different, but for the same purpose. So an OTC formulation might work better for some than Carnitor, because they are somewhat different. I took OTC carnitine (I think it was the tartrate) and had no effect, and Carnitor gave me some bad side effects (can cause seizures in rare cases, I always seem to be the rare case). Take care, RH Quote Link to comment Share on other sites More sharing options...
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