Guest guest Posted October 22, 1999 Report Share Posted October 22, 1999 , Almost to the letter, I've had the same experience. Lexi's neuro, who is taking the lead in her mito treatment has said that many mito problems are mild, some are even " transient " and can be " outgrown " ; on the other hand, I've had other " specialists " tell me that all mito problmes are progressive and always fatal. I finally have given up, deciding that NO ONE has anymore true insight than I do (which is just to watch the day-to-day development of my daughter). I guess what is Lexi's reality may not be true for the next person or the next........ ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 1999 Report Share Posted October 23, 1999 , I know this won't be very helpful to you but I think prognosis can vary just as symptoms greatly vary among mito patients. I agree with you that it seems kind of suspicious when a doctor says all his patients are doing great, especially when we know from this list that some people have not survived. Some do well and others don't. It seems to be very individual. Speaking of doctors > > > >Since I started the subject, just wondering what you folks have been getting from your doctors regarding >things like prognosis. I know that some doctors are more optimistic than others. For instance, when I spoke >to Dr. Kelley, he told me to throw away all the literature I had on mitochondrial disease that was >pessimistic. He said that mito. is quite treatable and that all of his patients are doing terrific. Then >again, I had another geneticist tell me that all mitochondrial disease is progressive and fatal and that there >is little you can do except maybe slow down the progression. > >I just don't know who to listen to sometimes. It is often a doctor's gut reaction, I think, to give the worst >case scenario so that they don't get blamed when things go poorly. So when I come across a doctor who is >actually optimistic, I am almost skeptical. > >What do you all find when dealing with the docs? > > > >>Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 1999 Report Share Posted October 23, 1999 , Life is progressive, aging is fatal. We're all going to die sometime, so I can't really say that that metabolic geneticist is wrong. I just don't think he is being very accurate though. Yes there are certain mitochondrial diseases that are worse than others, but by no means are they all a death sentence. Mito is a treatable disease, as evidenced by the fact that there are many adults out there, myself included that have had it probably all of their lives, or at the very least all of their adult lives. We were told more than once that Caitlin would not survive, or that she would never leave ICU. There were several years that were cautioned that this would likely be her last. However, over the years we have learned a lot about " her " disease and how to manage it. She is now 11 years old, and she is stable and happy and doing better now than she has ever done before in her life. At one point we had made the decision to sign a DNR order for Caitlin, and at this point, I don't think I'd even consider that. There is such a lack of knowledge about mito, even among the best of doctors. Historically the only patients that got publicity, were the extremely severely affected, and many of those did not survive. Those were the only patients that doctors were aware of. I suspect there are many many others around today that have never been diagnosed. So don't be discouraged. Find another doctor, one that is willing to manage and treat this disease and is not ready to chalk everything that happens up to the progression of the disease. Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 1999 Report Share Posted October 23, 1999 writes: >Then again, I had another geneticist tell me that all mitochondrial >disease is progressive and fatal and that there is little you can do except maybe >slow down the progression. Well, in the most literal sense, I guess that's right, but only because life itself is fatal. Substitute the word " aging " for " mitochondrial disease " above and see if it doesn't sound awfully similar. And then check out what I just came across on AOL: Researchers: Genes Fade With Age ..c The Associated Press WASHINGTON (AP) - The tiny energy source for cells in the body, called mitochondria, develop gene mutations over time in a process that may play a role in aging, researchers report. In a study to be published Friday in the journal Science, a team of scientists say it has found that up to half of the mitochondria carried gene mutations in some people age 65, while such mutations were absent in the cells of younger people. Mitochondria are small bodies in cells that provides the energy for the biochemical reactions that cells need to thrive. The mitochrondria have a set of genes that are independent of the genes contained in the chromosomes of a cell. The study was prompted by speculation that a decline in the mitochondria is linked to the aging process. The results show that the mitochondria genes do deteriorate with age, but it is not clear how this change affects cell life or mitochondria function, Dr. Giuseppe Attardi of the California Institute of Technology, senior author of the study, said in Science. I don't think it's unrealistic to say that as long as we're living in a world in which we all are mortal, living itself involves progressive deterioration and eventual fatality, mito or not. There is so much variation in any disease, that such generalizations are of limited use. (sitting beside my cat , age approx. 8, who is feline leukemia positive and was expected to die of his most recent cold -- but didn't) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 1999 Report Share Posted October 26, 1999 > Life is progressive, aging is fatal. We're all going to die sometime, > so I can't really say that that metabolic geneticist is wrong. I just > don't think he is being very accurate though. Yes there are certain > mitochondrial diseases that are worse than others, but by no means are > they all a death sentence. Mito is a treatable disease, as evidenced by > the fact that there are many adults out there, myself included that have > had it probably all of their lives, or at the very least all of their > adult lives. I would add that I think that " mito " is used interchangeably with Leigh's disease with some docs - meaning they use " mito " for Subacute Necrotizing Encephalomyelopathy and others who use " Leigh's " for everything with a mitochondrial component. Some are progressive, some are not. Just like muscular dystrophy, which covers a whole gamut of disorders mito can be a either a specific disorder (like MELAS or MERRF) or a side effect of disorders that are not considered " mito " . Quote Link to comment Share on other sites More sharing options...
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