Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 Hi, I'm from S. Central PA and 57. I've had a prelimiary diagnosis of some sort of a thiamine dependecy disorder for several years, probably PDCD (pyruvate dehydrogenase complex deficiency). I obtained the diagnosis by doing a huge amount of Internet research and then presenting my doc with my diagnosis hypothsesis and a list of confirming tests I wanted done. Almost all the tests results confirmed what I suspected and she agreed with the diagnosis. However, none of the doctors in the area know any more about PDCD it than I do (...and THAT is SCARY!) , plus they have been unable to suggest a specialist who might know more. The only specialists I had found on the net who treat it are at Children's Hospitals. Last weekend I was reading back posts on the Harvard Neuro Forum and saw a mom refer to PDCD as a MITOCHONDIRIAL Disease and I felt like I'd hit paydirt. I figure I should be able to locate a specialist in that field who works with adults. I'm in the process of trying to locate a place where second level mitochondrial test screening can be done and have contacted the Delaware Valley Support Group and the umdf for info....pending hearing from them. While I'm waiting, I thought it might be helpful to join this forum and make contact with other adults who have already been through all of this. Best Wishes, Anita in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 Yo Anita, I live in central PA, State College to be more precise. I have a mitochondrial myopathy. I have weakness in my peripheral muscle systems. It is a progressively worsening condition which started at age 35. I will be 50 in September. I am now in a wheel chair. I see Dr. , a neurologist, at the Hershey Medical Center, Hershey, PA (phone # ). Dr is part of MDA Clinic there. Your diagnosis, PDCD, maybe covered by MDA. Their phone # is . In Philadelphia there is Dr. Terry Heiman-. I believe she is runing the ALS clinic now. Another , Kristie lives down your way. She may write with some information. She sees too. Sorry we have to meet this way. However, you have found an excellent group. It is populated by knowledgeable and caring people.If I can be of assistance just write. Dave . > [Original Message] > > To: >; melobeau@...> > Date: 5/5/2004 2:56:17 PM > Subject: new member info > > Hi, I'm from S. Central PA and 57. I've had a prelimiary diagnosis of > some sort of a thiamine dependecy disorder for several years, probably > PDCD (pyruvate dehydrogenase complex deficiency). I obtained the > diagnosis by doing a huge amount of Internet research and then > presenting my doc with my diagnosis hypothsesis and a list of confirming > tests I wanted done. Almost all the tests results confirmed what I > suspected and she agreed with the diagnosis. However, none of the > doctors in the area know any more about PDCD it than I do (...and THAT > is SCARY!) , plus they have been unable to suggest a specialist who > might know more. The only specialists I had found on the net who treat > it are at Children's Hospitals. > > Last weekend I was reading back posts on the Harvard Neuro Forum and saw > a mom refer to PDCD as a MITOCHONDIRIAL Disease and I felt like I'd hit > paydirt. I figure I should be able to locate a specialist in that field > who works with adults. I'm in the process of trying to locate a place > where second level mitochondrial test screening can be done and have > contacted the Delaware Valley Support Group and the umdf for > info....pending hearing from them. > > While I'm waiting, I thought it might be helpful to join this forum and > make contact with other adults who have already been through all of > this. > > Best Wishes, > Anita in PA > > > > > > > > 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 May 5, 2004 Report Share Posted May 5, 2004 Hi , Thanks so much for your reply. I have much to learn and I appreciate your generous guidance! Yes, meeting is person would be great, but this is nice, too! (and oh, so helpful to me). << I see Dr. , a neurologist, at the Hershey Medical Center, > Your diagnosis, PDCD, maybe covered by MDA.>> Newbie question....what does MDA stand for? I called the neurology dept at Hershey this morning before I read your post and nobody there seeme to know what a mitochondrial disease WAS. My experience with general all-around neurologists has been pretty awful (all 4 of them), so I'm hoping to find a doc who is knowledgeable specifically about PDCD (or PDD as it is also called). It's a rather rare (guess most mito diseases are) B1 (thiamine) dependency disorder that can cause neuro problems, but I would have to say my symptoms are only partially neuro, and the worst of them are transient, depending on my level of stress or physical exertion and how recently I've had a B1 injection. The symptoms are mostly crushing fatigue, complete carbohydrate intolerance, shortness of breath, widespread nerve pain, staggering, ataxia, etc. However, I am SO lucky in that I usually CAN walk and I can also usually use my hands.... I earn my living as a musician and artist, so I am REALLY blessed. I am delighted to say that I just found out I THINK a doc in DC area will see me. Still waiting to hear the details. Very excited. I'd like to know more about all types of mytochondrial diseases, and I suspect each person in this groups has an interesting and unique story to tell. Do they know what causes your mitochondrial myopathy? You have a wonderful attitude and I realy admire that. Best Wishes, Anita in sville PA (York County) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 Hi Anita Welcome to the group. It does fall in the mito family. We are all so very different. People within the same family can have very different symptoms, depending on what organ systems are affected. We have 4 plus my mom who just passed away that have definitive diagnosis and another 3 with probable mito. Not one of us has the same systems. My sister, on the list, and I are probably the closest, but haven't always been that way. One thing we have in common is the exercise intolerance. I'm glad you found us, but not glad you need to seek us out. laurie > > Organization: > Reply-To: > Date: Wed, 05 May 2004 13:03:57 -0400 > To: , melobeau@... > Subject: new member info > > Hi, I'm from S. Central PA and 57. I've had a prelimiary diagnosis of > some sort of a thiamine dependecy disorder for several years, probably > PDCD (pyruvate dehydrogenase complex deficiency). I obtained the > diagnosis by doing a huge amount of Internet research and then > presenting my doc with my diagnosis hypothsesis and a list of confirming > tests I wanted done. Almost all the tests results confirmed what I > suspected and she agreed with the diagnosis. However, none of the > doctors in the area know any more about PDCD it than I do (...and THAT > is SCARY!) , plus they have been unable to suggest a specialist who > might know more. The only specialists I had found on the net who treat > it are at Children's Hospitals. > > Last weekend I was reading back posts on the Harvard Neuro Forum and saw > a mom refer to PDCD as a MITOCHONDIRIAL Disease and I felt like I'd hit > paydirt. I figure I should be able to locate a specialist in that field > who works with adults. I'm in the process of trying to locate a place > where second level mitochondrial test screening can be done and have > contacted the Delaware Valley Support Group and the umdf for > info....pending hearing from them. > > While I'm waiting, I thought it might be helpful to join this forum and > make contact with other adults who have already been through all of > this. > > Best Wishes, > Anita in PA > > > > > > > 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 May 5, 2004 Report Share Posted May 5, 2004 Hi Anita, Welcome to the group! Mitoldies is a wonderful place to learn about mitochondrial diseases. I am 23 and have a carnitine deficiency, one of the many types of mitochondrial disease. There are many people here, and quite a range of types of mito and symptoms. MDA stands for Muscular Dystrophy Association. Mitochondrial Cytopathy is a one of the 42 neuromuscular diseases that the MDA covers. MDA has a clinic in which you can neurologists, respiratory therapists, physcial therapists, occupational therapists, etc. They offer many services which are often helpful to those of us with mito. MDA does see both children and adults. Their website is http://www.mdausa.org . You can find out more information about MDA there. UMDF's website is http://www.umdf.org. I am glad you have contacted them and hope that your local chapter can be of help. > Newbie question....what does MDA stand for? I called the > neurology dept at Hershey this morning before I read your post > and nobody there seeme to know what a mitochondrial disease > WAS. My experience with general all-around neurologists has > been pretty awful (all 4 of them), so I'm hoping to find a doc who > is knowledgeable specifically about PDCD (or PDD as it is also > called). It's a rather rare (guess most mito diseases are) B1 > (thiamine) dependency disorder that can cause neuro problems, > but I would have to say my symptoms are only partially neuro, > and the worst of them are transient, depending on my level of > stress or physical exertion and how recently I've had a B1 > injection. The symptoms are mostly crushing fatigue, complete > carbohydrate intolerance, shortness of breath, widespread nerve > pain, staggering, ataxia, etc. However, I am SO lucky in that I > usually CAN walk and I can also usually use my hands.... I earn > my living as a musician and artist, so I am REALLY blessed. > > I am delighted to say that I just found out I THINK a doc in DC > area will see me. Still waiting to hear the details. Very excited. > > I'd like to know more about all types of mytochondrial diseases, > and I suspect each person in this groups has an interesting and > unique story to tell. Do they know what causes your > mitochondrial myopathy? You have a wonderful attitude and I > realy admire that. > > Best Wishes, > Anita in sville PA (York County) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 Anita MDA stands for Muscular Dystrophy Association. Mito is one of the diseases that they cover. Since Matty Stapanek has mito and is their good-will ambassodore, more and more MDA neurologists are getting better and knowing about mito. They have run some articles on mito in their magazine, Quest. You can find them at laurie > > Reply-To: > Date: Wed, 05 May 2004 21:30:56 -0000 > To: > Subject: Re: new member info > > Hi , Thanks so much for your reply. I have much to learn > and I appreciate your generous guidance! Yes, meeting is > person would be great, but this is nice, too! (and oh, so helpful to > me). > > << I see Dr. , a neurologist, at the Hershey Medical > Center, >> Your diagnosis, PDCD, maybe covered by MDA.>> > > Newbie question....what does MDA stand for? I called the > neurology dept at Hershey this morning before I read your post > and nobody there seeme to know what a mitochondrial disease > WAS. My experience with general all-around neurologists has > been pretty awful (all 4 of them), so I'm hoping to find a doc who > is knowledgeable specifically about PDCD (or PDD as it is also > called). It's a rather rare (guess most mito diseases are) B1 > (thiamine) dependency disorder that can cause neuro problems, > but I would have to say my symptoms are only partially neuro, > and the worst of them are transient, depending on my level of > stress or physical exertion and how recently I've had a B1 > injection. The symptoms are mostly crushing fatigue, complete > carbohydrate intolerance, shortness of breath, widespread nerve > pain, staggering, ataxia, etc. However, I am SO lucky in that I > usually CAN walk and I can also usually use my hands.... I earn > my living as a musician and artist, so I am REALLY blessed. > > I am delighted to say that I just found out I THINK a doc in DC > area will see me. Still waiting to hear the details. Very excited. > > I'd like to know more about all types of mytochondrial diseases, > and I suspect each person in this groups has an interesting and > unique story to tell. Do they know what causes your > mitochondrial myopathy? You have a wonderful attitude and I > realy admire that. > > Best Wishes, > Anita in sville PA (York County) > > > > > > > > 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 May 5, 2004 Report Share Posted May 5, 2004 Hi Laurie, So nice to hear from you. Wow, this groups is like coming home. I never knew there were other people around " kind of like me " . It's so interesting to me that your family shares the diagnosis but have many different symptoms. Certainly not the common bond one would choose, but I expect you understand each other much better than many families Looking back I can see the beginnings of my own health problems in childhood that mirrored some of my mothers, and possibly my maternal grandfather. Don't know for sure that I'll get a diagnosis of mito, but I found your comment of the common thread of exercise intolerance to be right on for me. I can start out looking and feeling pretty normal, but after exercise I'm spastic, staggering and often can't write or talk. Best Wishes, Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 Anita Looking back on my childhood, I was symptomatic back then, although not like I am today. It is hard to know abnormal when you have never known normal. Looking back now, many things make sense. laurie PS-by the way, I have two good friends named Anita. > > Reply-To: > Date: Wed, 05 May 2004 22:10:46 -0000 > To: > Subject: Re: new member info > > Hi Laurie, So nice to hear from you. Wow, this groups is like > coming home. I never knew there were other people around > " kind of like me " . > > It's so interesting to me that your family shares the diagnosis but > have many different symptoms. Certainly not the common bond > one would choose, but I expect you understand each other much > better than many families > > Looking back I can see the beginnings of my own health > problems in childhood that mirrored some of my mothers, and > possibly my maternal grandfather. > > Don't know for sure that I'll get a diagnosis of mito, but I found > your comment of the common thread of exercise intolerance to > be right on for me. I can start out looking and feeling pretty > normal, but after exercise I'm spastic, staggering and often can't > write or talk. > > Best Wishes, > Anita > > > > > > > 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 May 5, 2004 Report Share Posted May 5, 2004 In a message dated 5/5/2004 2:59:51 PM Eastern Standard Time, melobeau@... writes: Last weekend I was reading back posts on the Harvard Neuro Forum and saw a mom refer to PDCD as a MITOCHONDIRIAL Disease and I felt like I'd hit paydirt. I figure I should be able to locate a specialist in that field who works with adults. I'm in the process of trying to locate a place where second level mitochondrial test screening can be done and have contacted the Delaware Valley Support Group and the umdf for info....pending hearing from them. Hi Anita, Welcome! I am 26 and have had symptoms of mito since I was 14. I also live in PA, about an hour north of Philadelphia. Unfortunately I have not found that too many adult docs in Philadelphia really know a lot about mito. But, there are a few good ones that I think mentioned....I see Dr Heiman- at Hahnemahn Hosp. in Philadelphia for local management of the mito issues. She is a neurologist and I have found her to be extremely thorough especially when I have been really sick. I also travel up to Boston several times a year to see a mito specialist, Dr Korson, who has really helped to guide my local doctors. How far is Philadelphia from you? The UMDF Chapter has monthly support groups in Philadelphia for families and affected adults with mito. They have tried several times to get an occasional meeting going specifically for affected adults as well. It would be great to hopefully have you with us in the future! Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Hi Nikkinetgirl, Thanks for the info on MDA. I'm finding learning about mito diseases to be fascinating. It seems like, so far, each of you has a unique medical problem that is linked through the common factor of mito malfunction. I don't think I have any MDA symptoms and was told that my blood tests results ruled it out, so I guess my symptoms just lead down a different path. It's so wonderful to meet you good folks. I've been chasing a diagnosis for about 22 years since I contracted Lyme Disease (misdiagnosed for 9 years) and my body just went on strike, so I feel a whole lot less alone here. Thanks! Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Hi Malisa, Thanks so much for your reply, I have printed out your info and will save it in case the doc in DC doesn't work out. So glad that you have founds docs who are helping you! I'm about 2-2 1/2 hours west of Philly (depending on the traffic). Baltimore is closer, but so far, I haven't found many resources in land. Thanks for letting me know about the suport group. It may work out to travel that far sometime in the future. Right now I'm trying to save most of what I have for work. Best Wishes, Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Hi Anita. Sorry for taking so long to pop in and say hello. A busy week of medical appointments and family commitments has wiped me out. I live in Fulton County so we are practically neighbors anyway. Who did you find to see you in DC? I was seen there for 13 years before transferring to Hershey and may be familiar with the doc you are headed to. The person you spoke to at Hershey in the neuro dept. may not have had any knowledge of mito disorders, but there are two very talented neuro there who have the knowledge and treat both adults and children. I also believe Dr. (the adult doc that Dave mentioned) is familiar with B1 deficiencies as it was considered in my case when I first started seeing him. If things don't work out for you in DC maybe you will give them another shot. Let me know if you have any questions. Kristie Message: 10 Date: Wed, 5 May 2004 16:52:46 -0400 Subject: RE: new member info Yo Anita, I live in central PA, State College to be more precise. I have a mitochondrial myopathy. I have weakness in my peripheral muscle systems. It is a progressively worsening condition which started at age 35. I will be 50 in September. I am now in a wheel chair. I see Dr. , a neurologist, at the Hershey Medical Center, Hershey, PA (phone # ). Dr is part of MDA Clinic there. Your diagnosis, PDCD, maybe covered by MDA. Their phone # is . In Philadelphia there is Dr. Terry Heiman-. I believe she is runing the ALS clinic now. Another , Kristie lives down your way. She may write with some information. She sees too. Sorry we have to meet this way. However, you have found an excellent group. It is populated by knowledgeable and caring people.If I can be of assistance just write. Dave . > [Original Message] > > To: >; melobeau@...> > Date: 5/5/2004 2:56:17 PM > Subject: new member info > > Hi, I'm from S. Central PA and 57. I've had a prelimiary diagnosis of > some sort of a thiamine dependecy disorder for several years, probably > PDCD (pyruvate dehydrogenase complex deficiency). I obtained the > diagnosis by doing a huge amount of Internet research and then > presenting my doc with my diagnosis hypothsesis and a list of confirming > tests I wanted done. Almost all the tests results confirmed what I > suspected and she agreed with the diagnosis. However, none of the > doctors in the area know any more about PDCD it than I do (...and THAT > is SCARY!) , plus they have been unable to suggest a specialist who > might know more. The only specialists I had found on the net who treat > it are at Children's Hospitals. > > Last weekend I was reading back posts on the Harvard Neuro Forum and saw > a mom refer to PDCD as a MITOCHONDIRIAL Disease and I felt like I'd hit > paydirt. I figure I should be able to locate a specialist in that field > who works with adults. I'm in the process of trying to locate a place > where second level mitochondrial test screening can be done and have > contacted the Delaware Valley Support Group and the umdf for > info....pending hearing from them. > > While I'm waiting, I thought it might be helpful to join this forum and > make contact with other adults who have already been through all of > this. > > Best Wishes, > Anita in PA > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Hi neighbor Kristie, Thanks so much for taking the time to reply, especially when you are kind of " wiped out " (a condition I understand well!). It's good to know that Dr. is a possible doc in Hershey who might be knowledgeable about B1 problems. I find it very interesting that B1 problems were considered for you in the beginning, it seems like it's so rare. Would take a special doc, I think, to have considered it as a possibility. Nice to now there is an alternative, if the doc in DC doesn't work out. Actually she's in land. She used to be at town, but is now at the National Institute of Health in Bethesda. Her name is Dr. Gropman and she is, or used to be, the contact person for the tri state chapter of the umdf. I thought that was a good sign. I hope so. Experience has made me VERY wary of doctors in general and neurologists in particular, so I'm MEGA nervous about this potential new " encounter " . Hoping that things slow down for you a bit and you are able to rest up a little and enjoy our glorious spring weather. Thanks and Best Wishes, Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Anita I am very familiar with Dr. Gropman. She did my first round of genetic testing way back when, consulted on my case plenty of times and has been a featured guest on our Monday night MDA chat. She will be returning to do another one in the near future. Hopefully you will be able to join us Monday nights from 9-10 p.m. at http://database.azstarnet.com/dynamic/plsql/mdachat25 You will need to register ahead of time to get a password. As far as Dr. Gropman I know Adrienne (from the list) either has seen her or tried to see her as well....Adrienne? Her experience is more current than mine. Wishing you well on your journey. Kristie Re: new member info > Hi neighbor Kristie, Thanks so much for taking the time to reply, > especially when you are kind of " wiped out " (a condition I > understand well!). > > It's good to know that Dr. is a possible doc in Hershey > who might be knowledgeable about B1 problems. I find it very > interesting that B1 problems were considered for you in the > beginning, it seems like it's so rare. Would take a special doc, I > think, to have considered it as a possibility. > > Nice to now there is an alternative, if the doc in DC doesn't work > out. Actually she's in land. She used to be at town, > but is now at the National Institute of Health in Bethesda. Her > name is Dr. Gropman and she is, or used to be, the > contact person for the tri state chapter of the umdf. I thought that > was a good sign. I hope so. Experience has made me VERY > wary of doctors in general and neurologists in particular, so I'm > MEGA nervous about this potential new " encounter " . > > Hoping that things slow down for you a bit and you are able to > rest up a little and enjoy our glorious spring weather. > > Thanks and Best Wishes, > Anita > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Hi Anita, I'm also in Pa, near Phila. and i have to agree with and Malisa, Dr. at Hanaman Hosp is very knowlegable about MITO and her partner who i see is DR. Deboo is also a wonderful choice. Both are in the Neurology Dept at Hanaman Hosp in Phila, and both specialize in Mito disease. Hanaman Hosp also has a MDA clinic, which both Dr. and Dr. Deboo are involved with. And after waiting, 5 years for a definite diagnoses, and getting the run around from my x-family practice, it was through these two neurogist that my waiting and wondering ended. I strongly recommend both of these Neurologist. They're not only knowlegable about the disease, but very sensitive and supportive and that is very important to me. I hope you get the answers you are looking for very soon!! Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Hi Barb, Thanks so much for your reply and info. Quite a nice little group from eastern PA you have here on this forum! I have printed out your info and will certainly keep it in mind if the doc in MD/DC doesn't work out. Still waiting for her assistant to call me. Hoping I can ask you a question and maybe open it up to anybody else who cares to add their opinion. I've still very confused about the relationship between the " label " mitochondrial diseases and Muscular Dystrophy. Am I correct that MD is only one of many types of mito diseases? I read the list and description of the disease covered under the " umbrella " of the umdf (even though a lot of the terms I don't understand) and it seems like they cover a very wide range of symptomatology. I spent the entire morning going back through the archives and found a great deal of info, but most of it doesn't seem to apply to me very much. I'm not sure if I'm reading all the abbreviations correctly, but it seems like most folks here have muscular dystrophy-types of mito diseases. Pyruvate Dehydrogenase Complex Deficiency shares some of the symptoms, but it doesn't seem like it shares the majority. But then, I still don't know very much about it because all the info out there is mostly aimed towards babies/children who usually eventually die from it (even the info a the umdf site) . Anybody on the group here have it, or know of any adult who does? Thanks for tolerating my newbie questions! Anita in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Anita Mito is one of the many neuromuscular diseases that comes under the umbrella. They call it mitochondrial Myopathy, since they deal with neuromuscular diseases. So, the disease is mito and the umbrella is MDA. Since we all have different symptoms and there are many forms of mito, we are a group of folks who have a similar diagnosis, but very different diseases. Any defect which interfers with the function of the mitochondria and its ability to produce energy can be called mito. Both the mitochondrial DNA and nuclear DNA can cause mito. I hope this helps. laurie > > Reply-To: > Date: Thu, 06 May 2004 23:08:52 -0000 > To: > Subject: Re: new member info > > Hi Barb, Thanks so much for your reply and info. Quite a nice > little group from eastern PA you have here on this forum! I have > printed out your info and will certainly keep it in mind if the doc in > MD/DC doesn't work out. Still waiting for her assistant to call me. > > Hoping I can ask you a question and maybe open it up to > anybody else who cares to add their opinion. I've still very > confused about the relationship between the " label " > mitochondrial diseases and Muscular Dystrophy. Am I correct > that MD is only one of many types of mito diseases? I read the > list and description of the disease covered under the " umbrella " > of the umdf (even though a lot of the terms I don't understand) > and it seems like they cover a very wide range of > symptomatology. > > I spent the entire morning going back through the archives and > found a great deal of info, but most of it doesn't seem to apply to > me very much. I'm not sure if I'm reading all the abbreviations > correctly, but it seems like most folks here have muscular > dystrophy-types of mito diseases. > > Pyruvate Dehydrogenase Complex Deficiency shares some of > the symptoms, but it doesn't seem like it shares the majority. But > then, I still don't know very much about it because all the info out > there is mostly aimed towards babies/children who usually > eventually die from it (even the info a the umdf site) . Anybody on > the group here have it, or know of any adult who does? > > Thanks for tolerating my newbie questions! > > Anita in PA > > > > > > > > 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...
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