Guest guest Posted April 5, 2012 Report Share Posted April 5, 2012 What sort of problem are they having exactly. K low, weakness, or what?If familial aldo then it may mimic a mitochondrial disease(s). On Apr 5, 2012, at 8:38 PM, Ann Marie wrote: Hi, everyone. This question might be a little off topic, but I'm wondering if anyone has had, or has heard of, a primary hyperaldosteronism correlation with a mitochondrial disease. My children's developmental specialist wants a neurology consult as she suspects they might be dealing with that. I won't go into my thoughts and feelings about that here, but I know mitochondrial disorders are passed through the maternal dna, and all of a sudden, I'm feeling like a genetic sespool. It's early on, and I know I'm wildly speculating, but has this topic come up for anyone else? My AVS is scheduled for Tuesday, so there's a high probability that I'm anxious and overreacting about everything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2012 Report Share Posted April 5, 2012 I think the biggest flag for her was that they both have hypotonia and weakness, severe constipation (despite trying EVERYTHING), and my son has very frequent colds and flus with long recovery. They both seem to be heavy thinkers, which can look pretty dopey at times too. No basic labs have ever shown any concerns. So, isn't it only adults who show PA, even if the disposition toward it had always been there? Are there some signs early in life?Thanks! From: Clarence Grim <lowerbp2@...> hyperaldosteronism Cc: Clarence Grim <lowerbp2@...> Sent: Thursday, April 5, 2012 6:48 PM Subject: Re: PA and Mitochondrial Disorders What sort of problem are they having exactly. K low, weakness, or what?If familial aldo then it may mimic a mitochondrial disease(s). On Apr 5, 2012, at 8:38 PM, Ann Marie wrote: Hi, everyone. This question might be a little off topic, but I'm wondering if anyone has had, or has heard of, a primary hyperaldosteronism correlation with a mitochondrial disease. My children's developmental specialist wants a neurology consult as she suspects they might be dealing with that. I won't go into my thoughts and feelings about that here, but I know mitochondrial disorders are passed through the maternal dna, and all of a sudden, I'm feeling like a genetic sespool. It's early on, and I know I'm wildly speculating, but has this topic come up for anyone else? My AVS is scheduled for Tuesday, so there's a high probability that I'm anxious and overreacting about everything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2012 Report Share Posted April 5, 2012 PA can manifest at birth. Are their BPs OK. Echocardiograms been done. The first family I saw with GRA one of the boys was only 8 as I recall. CE Grim MDOn Apr 5, 2012, at 9:06 PM, Ann Marie Hardesty wrote: I think the biggest flag for her was that they both have hypotonia and weakness, severe constipation (despite trying EVERYTHING), and my son has very frequent colds and flus with long recovery. They both seem to be heavy thinkers, which can look pretty dopey at times too. No basic labs have ever shown any concerns. So, isn't it only adults who show PA, even if the disposition toward it had always been there? Are there some signs early in life?Thanks! From: Clarence Grim <lowerbp2@...> hyperaldosteronism Cc: Clarence Grim <lowerbp2@...> Sent: Thursday, April 5, 2012 6:48 PM Subject: Re: PA and Mitochondrial Disorders What sort of problem are they having exactly. K low, weakness, or what?If familial aldo then it may mimic a mitochondrial disease(s). On Apr 5, 2012, at 8:38 PM, Ann Marie wrote: Hi, everyone. This question might be a little off topic, but I'm wondering if anyone has had, or has heard of, a primary hyperaldosteronism correlation with a mitochondrial disease. My children's developmental specialist wants a neurology consult as she suspects they might be dealing with that. I won't go into my thoughts and feelings about that here, but I know mitochondrial disorders are passed through the maternal dna, and all of a sudden, I'm feeling like a genetic sespool. It's early on, and I know I'm wildly speculating, but has this topic come up for anyone else? My AVS is scheduled for Tuesday, so there's a high probability that I'm anxious and overreacting about everything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2012 Report Share Posted April 6, 2012 Ann Marie - My sister was recently undergoing testing for mitochondrial disorders and this is what I gleaned from my reading. Mitochondrial disorders can be caused in three main ways: maternal mitochondrial inheritance, genetic mutation in non-mitochodrial DNA, and environmental. In my sister's case, the damage to her mitochondria was caused by a toxic reaction to an antibiotic not mitochondrial or other genetic inheritance. Mitochondrial disorder syndromes are widely varied. Some of these syndromes do involve endocrine disorders - including adrenal. A diagnosis of a mitochondrial disorder can be helpful in the treatment of the various components of a particular syndrome as certain medications are contraindicated. Also supplementation with a " Mito cocktail " of prescription grade supplements can support overall health and improve quality of life. We are all subject to the genetic crap-shoot and must play the hand we are dealt. (sorry for the mixed gambling metaphors) We cannot place the blame on ourselves or parents for our genes. We can however seek answers and the optimum treatment available. Further investigation into the possibility of mitochondrial disorders could help you and your children find better treatment. > > Â > >Hi, everyone. This question might be a little off topic, but I'm wondering if anyone has had, or has heard of, a primary hyperaldosteronism correlation with a mitochondrial disease. My children's developmental specialist wants a neurology consult as she suspects they might be dealing with that. I won't go into my thoughts and feelings about that here, but I know mitochondrial disorders are passed through the maternal dna, and all of a sudden, I'm feeling like a genetic sespool. It's early on, and I know I'm wildly speculating, but has this topic come up for anyone else? My AVS is scheduled for Tuesday, so there's a high probability that I'm anxious and overreacting about everything. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2012 Report Share Posted April 6, 2012 The supplements referred to are of a grade and strength that cannot be bought OTC - Many Mito patients have their prescribed cocktail produced by compounding pharmacies since the volume/number of even prescription strength supplements are difficult to handle - Further, while many of the components of the cocktail are the same, each prescription varies with the patient. OTC supplements will do little or nothing for mito patients since they are unable to obtain the required levels of supplements - just lots of filler to plump up the horse pills. > > > Also supplementation with a " Mito cocktail " of prescription grade > > supplements can support overall health and improve quality of life. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2012 Report Share Posted April 6, 2012 Totally agree lk, what is done is done but I will add that we can decide if we want to continue the process to future generations! Ask any breeder of pedigree dogs! Something that may even have been unknown 1 or 2 generations back may now be known and identifyable or in the process of being identified! Let me give you an example. Why was my mothers kidney removed in 1944? Did somebody miss an opportunity 12 years earlier? Was there a problem then and they took to whole kidney instead of just the adrenal? Why did my brother have a kidney transplant and why does his oldest daughter have a kidney problem and are they related? (Those two are related but may not be relevent to my questions IMHO!) Is there an an issue for me and the gene pool that goes on to my next generation and I may share with my living brother and sisters? > > > > Â > > >Hi, everyone. This question might be a little off topic, but I'm wondering if anyone has had, or has heard of, a primary hyperaldosteronism correlation with a mitochondrial disease. My children's developmental specialist wants a neurology consult as she suspects they might be dealing with that. I won't go into my thoughts and feelings about that here, but I know mitochondrial disorders are passed through the maternal dna, and all of a sudden, I'm feeling like a genetic sespool. It's early on, and I know I'm wildly speculating, but has this topic come up for anyone else? My AVS is scheduled for Tuesday, so there's a high probability that I'm anxious and overreacting about everything. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2012 Report Share Posted April 6, 2012 It may well turn out to be. Like PA these are rare conditions and relatively little is known. For more general information about these conditions please refer to http://www.umdf.org > > > > > > > Also supplementation with a " Mito cocktail " of prescription grade > > > > supplements can support overall health and improve quality of life. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2012 Report Share Posted April 6, 2012 Totally agree and will likely know more in a couple of days (may or not help you)! > > > > > > > > > Also supplementation with a " Mito cocktail " of prescription grade > > > > > supplements can support overall health and improve quality of life. > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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