Guest guest Posted September 30, 2005 Report Share Posted September 30, 2005 Anybody know the significance of these labs? Mildly low ceruloplasmin 24 hour urine copper 3 L (15-50) Alpha Galactosidase 0.340 H (0.016-0.200) Our PCP has said that the alpha galactosidase is incompatible with life. The info I have found suggests that in Fabry's disease this is low or absent. Some info suggests that it can be abnormal in 's or Menke's variant. is 16, almost 17. Whiteman suggested these tests and found a strange ring in his eye. Neuro opthomologist with mito experience did not mention the eyes. There are, of course, many other lab irregularities. Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie __________________________________ Yahoo! Mail - PC Magazine Editors' Choice 2005 http://mail.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2005 Report Share Posted October 1, 2005 I don't know the significants of this labs, but encourage you to have them redone if they are showing something. I was told I had hepatitis from a lab, but those labs were normal on repeat. We are not sure if the first labs were wrong, something else was going on or my mito body did strange things. laurie > Anybody know the significance of these labs? > > Mildly low ceruloplasmin > 24 hour urine copper 3 L > (15-50) > Alpha Galactosidase 0.340 H > (0.016-0.200) > > Our PCP has said that the alpha galactosidase is > incompatible with life. The info I have found suggests > that in Fabry's disease this is low or absent. Some > info suggests that it can be abnormal in 's or > Menke's variant. is 16, almost 17. Whiteman > suggested these tests and found a strange ring in his > eye. Neuro opthomologist with mito experience did not > mention the eyes. There are, of course, many other lab irregularities. > > > > Mom to the two best kids in the world! > http://www.caringbridge.org/visit/thomasandkatie > > > > __________________________________ > Yahoo! Mail - PC Magazine Editors' Choice 2005 > http://mail.yahoo.com > > > > > > > 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 October 1, 2005 Report Share Posted October 1, 2005 The alpha galactosidase is also known as alpha-N-acetylgalactosaminidase. I believe that it is significant in that it causes secondary mitochondrial dysfunction. This points to mito as the disease causing agent. It also seems to suggest a reason for periodic hyperglycemia, the GI upset as well as the hematological issues my children and I have. Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie __________________________________ Yahoo! Mail - PC Magazine Editors' Choice 2005 http://mail.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2005 Report Share Posted October 1, 2005 : I wander if this could be why ten (?) years ago I was put on Orinaise for a time then was told to stop taking it, again five/six years ago I was on Diabeta for a time and was told I didn't need to take it any longer? The cardiologist that treated me when I was hospitalized in July due to a mild stroke and light heart attack all from friday night until sunday when I was sure I was having a heart attack and called my son to take me to the hospital. I gained five pounds ovenight when I was in the hospital and Dr. Wu started running tests and is treating me for diabetes insipidus as I had been swelling " everywhere " badly for quite some time. He put me on a medication to help my kidneys secrete fliuid properly so that it would pass thru my kidneys instead of into my body?? Dolores Van Verst tbnkatie@...> wrote:The alpha galactosidase is also known as alpha-N-acetylgalactosaminidase. I believe that it is significant in that it causes secondary mitochondrial dysfunction. This points to mito as the disease causing agent. It also seems to suggest a reason for periodic hyperglycemia, the GI upset as well as the hematological issues my children and I have. Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie __________________________________ Yahoo! Mail - PC Magazine Editors' Choice 2005 http://mail.yahoo.com 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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