Guest guest Posted October 22, 2004 Report Share Posted October 22, 2004 Hi Debra, no you missed the point ...they are going all out to find out what is REALLY wrong...The gentic approach is a no go...there are now known to be so many mutations on genes in MITO.. knowing a gene won't help me or any one in my family BUT isolating problems that have the potential to cause further problems will...There is no indication in the family as to which area of mito disease they should look..the genetics lot drew a blank. MY MIND IS IN A WHIRL BECAUSE I FOUND IT SO VERY POSITIVE.... CAH is found in mito. ...one of the genetically inherited forms fits my family and is treatable and if THAT is found in me that would mean my family could get treated before it caused trouble for them.. I want to cry because I feel that this is the direction I knew was needed...and I am getting it...hormones aren't just female ones its eryhpoetin renin aldosterone testosterone, estergen , pituatary, parathyroids etc etc etc...they have found problems with all those things in Mito...I don't want to waste time with genetic diagnosis lets balance out my body system ie. hormones.I have spent 18 months with that...and everything else being ignored. I feel as if I have had such a 'boost'of fantastic input. Gillian > I am posting here since this might reach you faster than privately. I too have a larger left kidney and the right was the size of a 6 month old baby's until they increased circulation to it and now it is normal sized. I was checked for pheyo and it was ruled out by a scan. I am now dependent on my prednisone but that certainly isn't a genetic thing. > > I see why you are in a whirl but can't imagine why your specialists suddenly have dropped the genetic approach and now lean in another direction. Male physicians here are always ready to blame a female problem on hormones...doesn't matter the problem or the hormone, well they have to admit a broken arm from a fall wasn't directly caused by hormones, but they might check to be certain. > > In Texas something like this makes us " want to kick some butt " , I am willing to meet you at Heathrow and give your specialists a piece of my mind (it will have to be a small piece as I am running low on brain as it is). > > Keep us posted about their thoughts. If I bring Alice along she will really give them a thought or two! > > Debra > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2004 Report Share Posted October 22, 2004 -Night Debra..need my bath and bed after a very long day English (((((hugs))))) (((((smiles))))) to you in the US. Gillian -- In , " Debra Beckmann " wrote: > I told you I didn't have much brain left. We also like to give big hugs so if you are happy I will send one of those! Yes, finding answers for my family is my prime concern, I will pray they get busy and finally give you the correct answers. > > Debra, with a huge cyber hug! > > Quote Link to comment Share on other sites More sharing options...
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