Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Hey Friends, I know it has been forever since I have posted. I have been trying to catch up on the posts. I had surgery at the end of Jan. and as you know, recovery can be awful for Mito Patients. I also started my own business and I am trying to get it off the ground ( all of us know the finanical burden Mito can have on a family----with 3 of us on the coctail and needing a slew of meds, I needed to do something to make some money! ) Working from home has been a God Send because on a Crash I can spend the day resting and working when I feel well. Anyway, to get back to the topic at hand--------I read just briefly a few of the posts about Complex II Deficiency and siblings with Mito. Both my sons and I have been diagnosed with Mito and my younger son, , who was biopsied at 11 months was found to have a Complex II-III Def of the ETC. Drew, my older son was also seen by DR. Cohen at CCF and he was diagnosed with Mito based on clinical symptoms and lab results. I was biopsed last year at CCF and seen several times by DR. Cohen. My biopsy showed similar findings and my extremely elevated Lactic Acid of the Cerebral Spinal Fluid confirmed the diagnosis. He has been treating all of us for about 5 years now. At first we were told that a Complex II-III Def could NOT be an MT DNA Defect because Complex II is entirely NUCLEAR and not maternally inherited and Complex III has only one or two units that are Maternally Inherited. I think that the world of Mito Medicine is CONSTANTLY changing and the docs and researchers are learning new information all the time. Even tho the statistics were stacked on the nuclear side, we were found to have a maternally inherited Mito Disease that was once thought to be improbable. If there are any other families who have a similar Mito Defect or an Inherited Def in Complex II-III I would love to talk with you . Glad to be back and looknig forward to seeing all of my friends in Pittsburgh :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 I'm glad to hear you will be at the conference. I agree that the science is no where near where it needs to be, even though it has come a long way. I think that looking at the genetic pattern within a family may give the docs more information than the logic of what they have already discovered. Our family is dealing with three genetic diseases and I wish that someone would look at the possibility that the defects might all be in the same region. Of course we haven't figured out a transmission pattern for the other two as of yet. See you in Pittsburgh! Laurie > > Reply-To: > Date: Tue, 01 Jun 2004 23:59:50 -0000 > To: > Subject: Complex II > > Hey Friends, > I know it has been forever since I have posted. I have been trying > to catch up on the posts. I had surgery at the end of Jan. and as you > know, recovery can be awful for Mito Patients. I also started my own > business and I am trying to get it off the ground ( all of us know > the finanical burden Mito can have on a family----with 3 of us on the > coctail and needing a slew of meds, I needed to do something to make > some money! ) Working from home has been a God Send because on a > Crash I can spend the day resting and working when I feel well. > > Anyway, to get back to the topic at hand--------I read just briefly > a few of the posts about Complex II Deficiency and siblings with > Mito. Both my sons and I have been diagnosed with Mito and my > younger son, , who was biopsied at 11 months was found to have > a Complex II-III Def of the ETC. Drew, my older son was also seen by > DR. Cohen at CCF and he was diagnosed with Mito based on clinical > symptoms and lab results. I was biopsed last year at CCF and seen > several times by DR. Cohen. My biopsy showed similar findings and my > extremely elevated Lactic Acid of the Cerebral Spinal Fluid confirmed > the diagnosis. He has been treating all of us for about 5 years now. > At first we were told that a Complex II-III Def could NOT be an MT > DNA Defect because Complex II is entirely NUCLEAR and not maternally > inherited and Complex III has only one or two units that are > Maternally Inherited. I think that the world of Mito Medicine is > CONSTANTLY changing and the docs and researchers are learning new > information all the time. Even tho the statistics were stacked on the > nuclear side, we were found to have a maternally inherited Mito > Disease that was once thought to be improbable. > > If there are any other families who have a similar Mito Defect or an > Inherited Def in Complex II-III I would love to talk with you . > > Glad to be back and looknig forward to seeing all of my friends in > Pittsburgh :-) > > > > > > 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 1, 2004 Report Share Posted June 1, 2004 Laurie, I agree with you 100000%!!! When you think of all the progress that area of Mito Medicine has made in just the past few years since Dallas-it is can make your head spin!!! Of course, there is so much that isn't known. Time will hopefully give us all the answers we are all looking for. For now, I will continue to Pray that we all remain healty and happy. I am really looking forward to seeing you and at the Conference again. Do you happen to know it a Koch will be there? I need to email her.....it has been a while since we have spoken on the phone to catch up on what is new. Take Care , > > > I'm glad to hear you will be at the conference. > > I agree that the science is no where near where it needs to be, even though > it has come a long way. I think that looking at the genetic pattern within a > family may give the docs more information than the logic of what they have > already discovered. > > Our family is dealing with three genetic diseases and I wish that someone > would look at the possibility that the defects might all be in the same > region. Of course we haven't figured out a transmission pattern for the > other two as of yet. > > See you in Pittsburgh! > Laurie > > > From: " mitomomtoo " > > Reply-To: > > Date: Tue, 01 Jun 2004 23:59:50 -0000 > > To: > > Subject: Complex II > > > > Hey Friends, > > I know it has been forever since I have posted. I have been trying > > to catch up on the posts. I had surgery at the end of Jan. and as you > > know, recovery can be awful for Mito Patients. I also started my own > > business and I am trying to get it off the ground ( all of us know > > the finanical burden Mito can have on a family----with 3 of us on the > > coctail and needing a slew of meds, I needed to do something to make > > some money! ) Working from home has been a God Send because on a > > Crash I can spend the day resting and working when I feel well. > > > > Anyway, to get back to the topic at hand--------I read just briefly > > a few of the posts about Complex II Deficiency and siblings with > > Mito. Both my sons and I have been diagnosed with Mito and my > > younger son, , who was biopsied at 11 months was found to have > > a Complex II-III Def of the ETC. Drew, my older son was also seen by > > DR. Cohen at CCF and he was diagnosed with Mito based on clinical > > symptoms and lab results. I was biopsed last year at CCF and seen > > several times by DR. Cohen. My biopsy showed similar findings and my > > extremely elevated Lactic Acid of the Cerebral Spinal Fluid confirmed > > the diagnosis. He has been treating all of us for about 5 years now. > > At first we were told that a Complex II-III Def could NOT be an MT > > DNA Defect because Complex II is entirely NUCLEAR and not maternally > > inherited and Complex III has only one or two units that are > > Maternally Inherited. I think that the world of Mito Medicine is > > CONSTANTLY changing and the docs and researchers are learning new > > information all the time. Even tho the statistics were stacked on the > > nuclear side, we were found to have a maternally inherited Mito > > Disease that was once thought to be improbable. > > > > If there are any other families who have a similar Mito Defect or an > > Inherited Def in Complex II-III I would love to talk with you . > > > > Glad to be back and looknig forward to seeing all of my friends in > > Pittsburgh :-) > > > > > > > > > > > > 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 2, 2004 Report Share Posted June 2, 2004 I don't know if e is going to the conference or not. She has not been doing real well lately. laurie > > Reply-To: > Date: Wed, 02 Jun 2004 03:29:27 -0000 > To: > Subject: Re: Complex II > > > > Laurie, > I agree with you 100000%!!! When you think of all the progress that > area of Mito Medicine has made in just the past few years since > Dallas-it is can make your head spin!!! Of course, there is so much > that isn't known. Time will hopefully give us all the answers we are > all looking for. For now, I will continue to Pray that we all remain > healty and happy. > > I am really looking forward to seeing you and at the > Conference again. Do you happen to know it a Koch will be > there? I need to email her.....it has been a while since we have > spoken on the phone to catch up on what is new. > > Take Care , > > > > > > > > > > >> >> >> I'm glad to hear you will be at the conference. >> >> I agree that the science is no where near where it needs to be, > even though >> it has come a long way. I think that looking at the genetic pattern > within a >> family may give the docs more information than the logic of what > they have >> already discovered. >> >> Our family is dealing with three genetic diseases and I wish that > someone >> would look at the possibility that the defects might all be in the > same >> region. Of course we haven't figured out a transmission pattern for > the >> other two as of yet. >> >> See you in Pittsburgh! >> Laurie >> >>> From: " mitomomtoo " >>> Reply-To: >>> Date: Tue, 01 Jun 2004 23:59:50 -0000 >>> To: >>> Subject: Complex II >>> >>> Hey Friends, >>> I know it has been forever since I have posted. I have been > trying >>> to catch up on the posts. I had surgery at the end of Jan. and as > you >>> know, recovery can be awful for Mito Patients. I also started my > own >>> business and I am trying to get it off the ground ( all of us know >>> the finanical burden Mito can have on a family----with 3 of us on > the >>> coctail and needing a slew of meds, I needed to do something to > make >>> some money! ) Working from home has been a God Send because on a >>> Crash I can spend the day resting and working when I feel well. >>> >>> Anyway, to get back to the topic at hand--------I read just > briefly >>> a few of the posts about Complex II Deficiency and siblings with >>> Mito. Both my sons and I have been diagnosed with Mito and my >>> younger son, , who was biopsied at 11 months was found to > have >>> a Complex II-III Def of the ETC. Drew, my older son was also > seen by >>> DR. Cohen at CCF and he was diagnosed with Mito based on clinical >>> symptoms and lab results. I was biopsed last year at CCF and seen >>> several times by DR. Cohen. My biopsy showed similar findings and > my >>> extremely elevated Lactic Acid of the Cerebral Spinal Fluid > confirmed >>> the diagnosis. He has been treating all of us for about 5 years > now. >>> At first we were told that a Complex II-III Def could NOT be an MT >>> DNA Defect because Complex II is entirely NUCLEAR and not > maternally >>> inherited and Complex III has only one or two units that are >>> Maternally Inherited. I think that the world of Mito Medicine is >>> CONSTANTLY changing and the docs and researchers are learning new >>> information all the time. Even tho the statistics were stacked on > the >>> nuclear side, we were found to have a maternally inherited Mito >>> Disease that was once thought to be improbable. >>> >>> If there are any other families who have a similar Mito Defect or > an >>> Inherited Def in Complex II-III I would love to talk with you . >>> >>> Glad to be back and looknig forward to seeing all of my friends in >>> Pittsburgh :-) >>> >>> >>> >>> >>> >>> 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 2, 2004 Report Share Posted June 2, 2004 , I am hoping to get to the conference, but it is still all up in the air. It has been an on again off again situation lately due to not feeling well. The more I hear people talk about it, the more determined I am to get there. My health has been an issue more lately, but hopefully it will straighten out by then! :-) We do need to call or e-mail each other to catch up. It has been to long! Smiles, a On Wed, 02 Jun 2004 17:16:47 -0400 Laureta Fitzgerald lfitzger@...> writes: I don't know if e is going to the conference or not. She has not been doing real well lately. laurie > > Reply-To: > Date: Wed, 02 Jun 2004 03:29:27 -0000 > To: > Subject: Re: Complex II > > > > Laurie, > I agree with you 100000%!!! When you think of all the progress that > area of Mito Medicine has made in just the past few years since > Dallas-it is can make your head spin!!! Of course, there is so much > that isn't known. Time will hopefully give us all the answers we are > all looking for. For now, I will continue to Pray that we all remain > healty and happy. > > I am really looking forward to seeing you and at the > Conference again. Do you happen to know it a Koch will be > there? I need to email her.....it has been a while since we have > spoken on the phone to catch up on what is new. > > Take Care , > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.