Guest guest Posted June 10, 2004 Report Share Posted June 10, 2004 Dear a and , Please post and let us know how you both are. We know you were both having many problems. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2004 Report Share Posted June 10, 2004 and Laurie, Thanks for asking. Things here have been a little more hectic than usual, but I am doing fine and hanging in there. I am still having the fluid intake issues which is causing problems with my migraines, muscle fatigue and weakness and other things, including having my blood sugars bottoming out. I have been to the ER at least 6 or 7 times since I was released from the hospital on May 4. Maybe it has been more often. I lost track! :-) I get to the point where I am very dizzy and to the point of passing out before I go. The fluids help me stabilize. There had been the talk of a central line or g-tube. Right now, that has all been stopped because my lab work looks fine and I don't look dehydrated. Supposedly there is no medical reasoning that the fluids should help me feel better. Well, sometimes our bodies just don't listen to medical reasoning. At least that is what I have found. :-) So, I am working hard at trying to get fluids in and keeping them in. I am not letting it stop me from doing a lot of things, like visit some relatives though. I am trying to stay out of a bigger crash. But, really, things are going okay here, other than just being frustrated at the doctors. None of them seem to feel they can think for themselves. Plus, no one knows about mito around here. My pharmacist loves me though, as I am keeping him in business. LOL He has been the biggest help with all of this. Sorry this got to be a long vent. I am doing okay. My energy level is just way down at this point. Smiles, a On Thu, 10 Jun 2004 07:37:55 -0400 BDS31@... writes: Dear a and , Please post and let us know how you both are. We know you were both having many problems. Love, 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 10, 2004 Report Share Posted June 10, 2004 , Mitochondrial DNA depletion syndrome is an inherited disorder. I have heard about it from Dr. Vladutiu. Percentage of depletion can vary a lot in different tissues, so symptoms can be quite varied, even in related patients. Here is the OMIM entry on mitochondrial DNA depletion syndrome. http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=251880 Take care, Barbara > , > > Thanks for asking! My labwork continues to look good. I will go next > Mon. for labs and then if everything is looking ok I will start going every > other week. Unfortunately I don't feel very well. I'm not sleeping well, and my > muscle pain is pretty intense. I did get my results from the MNGIE test and it > was neg. Praise! I'm still waiting on the gene test for the carnitine > transporter. I've e/mailed the lab and heard it generally takes a year to complete. > I'm looking for new theories and ideas as I'm not responding to the > carnitine supplementation. > Does anyone know what the difference is between mitochondrial depletion > and Mitochondrial DNA depletion. My fresh muscle biopsy showed mitochondria > depletion. I can't find anything as to what could have caused it other than > the ovious viruses and such that have long since been ruled out. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2004 Report Share Posted June 10, 2004 a I am glad you are doing " okay " . I wish you had access to knowledgeable docs. It can really make a difference. Keep track of all reports (I'm sure you do), so someday someone will take the time to see cause and effect, whether it makes sense or not. laurie > > Reply-To: > Date: Thu, 10 Jun 2004 17:09:41 -0500 > To: > Subject: Re: For a and > > and Laurie, > Thanks for asking. Things here have been a little more hectic > than usual, but I am doing fine and hanging in there. I am still having > the fluid intake issues which is causing problems with my migraines, > muscle fatigue and weakness and other things, including having my blood > sugars bottoming out. I have been to the ER at least 6 or 7 times since > I was released from the hospital on May 4. Maybe it has been more often. > I lost track! :-) I get to the point where I am very dizzy and to the > point of passing out before I go. The fluids help me stabilize. There > had been the talk of a central line or g-tube. Right now, that has all > been stopped because my lab work looks fine and I don't look dehydrated. > Supposedly there is no medical reasoning that the fluids should help me > feel better. Well, sometimes our bodies just don't listen to medical > reasoning. At least that is what I have found. :-) So, I am working > hard at trying to get fluids in and keeping them in. I am not letting it > stop me from doing a lot of things, like visit some relatives though. I > am trying to stay out of a bigger crash. But, really, things are going > okay here, other than just being frustrated at the doctors. None of them > seem to feel they can think for themselves. Plus, no one knows about > mito around here. My pharmacist loves me though, as I am keeping him in > business. LOL He has been the biggest help with all of this. Sorry this > got to be a long vent. I am doing okay. My energy level is just way > down at this point. > > Smiles, > a > > On Thu, 10 Jun 2004 07:37:55 -0400 BDS31@... writes: > Dear a and , > Please post and let us know how you both are. We know you were both > having many problems. > Love, > > > > > 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 10, 2004 Report Share Posted June 10, 2004 Laurie, I am certainly keeping records. I have also been able to e-mail and get answers from one of the mito specialists. He talked to my doctors in the beginning, but now they have decided to go away from what he suggests. I think I am just a puzzle to them. I do have a very good nurse case manager with my insurance that I am working with. She was going to be making some calls if today's appointment didn't get any results. Are you done with school yet? I know the end of the year is busy for you with all the IEP's. That is one thing I don't miss. I still sit in on some of them, but I don't have to write them now that I am " retired " ! :-) Smiles, a On Thu, 10 Jun 2004 19:13:35 -0400 Laureta Fitzgerald lfitzger@...> writes: a I am glad you are doing " okay " . I wish you had access to knowledgeable docs. It can really make a difference. Keep track of all reports (I'm sure you do), so someday someone will take the time to see cause and effect, whether it makes sense or not. laurie > > Reply-To: > Date: Thu, 10 Jun 2004 17:09:41 -0500 > To: > Subject: Re: For a and > > and Laurie, > Thanks for asking. Things here have been a little more hectic > than usual, but I am doing fine and hanging in there. I am still having > the fluid intake issues which is causing problems with my migraines, > muscle fatigue and weakness and other things, including having my blood > sugars bottoming out. I have been to the ER at least 6 or 7 times since > I was released from the hospital on May 4. Maybe it has been more often. > I lost track! :-) I get to the point where I am very dizzy and to the > point of passing out before I go. The fluids help me stabilize. There > had been the talk of a central line or g-tube. Right now, that has all > been stopped because my lab work looks fine and I don't look dehydrated. > Supposedly there is no medical reasoning that the fluids should help me > feel better. Well, sometimes our bodies just don't listen to medical > reasoning. At least that is what I have found. :-) So, I am working > hard at trying to get fluids in and keeping them in. I am not letting it > stop me from doing a lot of things, like visit some relatives though. I > am trying to stay out of a bigger crash. But, really, things are going > okay here, other than just being frustrated at the doctors. None of them > seem to feel they can think for themselves. Plus, no one knows about > mito around here. My pharmacist loves me though, as I am keeping him in > business. LOL He has been the biggest help with all of this. Sorry this > got to be a long vent. I am doing okay. My energy level is just way > down at this point. > > Smiles, > a > > On Thu, 10 Jun 2004 07:37:55 -0400 BDS31@... writes: > Dear a and , > Please post and let us know how you both are. We know you were both > having many problems. > Love, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2004 Report Share Posted June 10, 2004 a Tomorrow is the last day of school. The kids have half a day and the staff an entire day. I got lots done today, so my goal tomorrow is to get some help to get my wheelchair in my van. I'm really glad for vacation. laurie > > Reply-To: > Date: Thu, 10 Jun 2004 19:04:44 -0500 > To: > Subject: Re: For a and > > Laurie, > I am certainly keeping records. I have also been able to e-mail > and get answers from one of the mito specialists. He talked to my > doctors in the beginning, but now they have decided to go away from what > he suggests. I think I am just a puzzle to them. I do have a very good > nurse case manager with my insurance that I am working with. She was > going to be making some calls if today's appointment didn't get any > results. > Are you done with school yet? I know the end of the year is busy > for you with all the IEP's. That is one thing I don't miss. I still sit > in on some of them, but I don't have to write them now that I am > " retired " ! :-) > Smiles, > a > On Thu, 10 Jun 2004 19:13:35 -0400 Laureta Fitzgerald > lfitzger@...> writes: > a > > I am glad you are doing " okay " . I wish you had access to knowledgeable > docs. > It can really make a difference. Keep track of all reports (I'm sure you > do), so someday someone will take the time to see cause and effect, > whether > it makes sense or not. > > laurie > >> >> Reply-To: >> Date: Thu, 10 Jun 2004 17:09:41 -0500 >> To: >> Subject: Re: For a and >> >> and Laurie, >> Thanks for asking. Things here have been a little more hectic >> than usual, but I am doing fine and hanging in there. I am still > having >> the fluid intake issues which is causing problems with my migraines, >> muscle fatigue and weakness and other things, including having my blood >> sugars bottoming out. I have been to the ER at least 6 or 7 times > since >> I was released from the hospital on May 4. Maybe it has been more > often. >> I lost track! :-) I get to the point where I am very dizzy and to the >> point of passing out before I go. The fluids help me stabilize. There >> had been the talk of a central line or g-tube. Right now, that has all >> been stopped because my lab work looks fine and I don't look > dehydrated. >> Supposedly there is no medical reasoning that the fluids should help me >> feel better. Well, sometimes our bodies just don't listen to medical >> reasoning. At least that is what I have found. :-) So, I am working >> hard at trying to get fluids in and keeping them in. I am not letting > it >> stop me from doing a lot of things, like visit some relatives though. > I >> am trying to stay out of a bigger crash. But, really, things are going >> okay here, other than just being frustrated at the doctors. None of > them >> seem to feel they can think for themselves. Plus, no one knows about >> mito around here. My pharmacist loves me though, as I am keeping him > in >> business. LOL He has been the biggest help with all of this. Sorry > this >> got to be a long vent. I am doing okay. My energy level is just way >> down at this point. >> >> Smiles, >> a >> >> On Thu, 10 Jun 2004 07:37:55 -0400 BDS31@... writes: >> Dear a and , >> Please post and let us know how you both are. We know you were both >> having many problems. >> Love, >> >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 What about a case manager getting involved? It would have to be cheaper in the long run for you to be able to have the fluids at home than having to go to the hospital all the time. Money talks when the insurance companies get involved. Hugs, a C Koch wrote: > and Laurie, > Thanks for asking. Things here have been a little more hectic >than usual, but I am doing fine and hanging in there. I am still having >the fluid intake issues which is causing problems with my migraines, >muscle fatigue and weakness and other things, including having my blood >sugars bottoming out. I have been to the ER at least 6 or 7 times since >I was released from the hospital on May 4. Maybe it has been more often. > I lost track! :-) I get to the point where I am very dizzy and to the >point of passing out before I go. The fluids help me stabilize. There >had been the talk of a central line or g-tube. Right now, that has all >been stopped because my lab work looks fine and I don't look dehydrated. >Supposedly there is no medical reasoning that the fluids should help me >feel better. Well, sometimes our bodies just don't listen to medical >reasoning. At least that is what I have found. :-) So, I am working >hard at trying to get fluids in and keeping them in. I am not letting it >stop me from doing a lot of things, like visit some relatives though. I >am trying to stay out of a bigger crash. But, really, things are going >okay here, other than just being frustrated at the doctors. None of them >seem to feel they can think for themselves. Plus, no one knows about >mito around here. My pharmacist loves me though, as I am keeping him in >business. LOL He has been the biggest help with all of this. Sorry this >got to be a long vent. I am doing okay. My energy level is just way >down at this point. > >Smiles, >a > >On Thu, 10 Jun 2004 07:37:55 -0400 BDS31@... writes: >Dear a and , >Please post and let us know how you both are. We know you were both >having many problems. >Love, > > > > >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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