http://initheque.wordpress.com/2007/11/20/don%e2%80%99t-tell-my-achy-breaky-heart/ Sun, 19 Apr 2009 02:53:24 +0000 http://wordpress.com/ hourly 1 http://initheque.wordpress.com/2007/11/20/don%e2%80%99t-tell-my-achy-breaky-heart/#comment-2660 Irene Mottershead Mon, 26 Nov 2007 13:11:58 +0000 http://initheque.wordpress.com/2007/11/20/don%e2%80%99t-tell-my-achy-breaky-heart/#comment-2660 My son, also 17, has also been diagnosed with a connective tissue disease with muscle biopsy tests being done at the moment. He too has several features of marfans. He also has had several echocardiograms which have had minor pauses, but are considered to be normal. Until recently he did not have any pain, but developed a large number of twitches. For the last few months the pains he gets have increased, particularly in his chest, but still the echocardiograms show no sign of there being any problems. He is tomorrow having an MRI and MRA scans to check for dural ectasia or widening of the foraminae. I do not want to burst your balloon, but would seriously advise you push to have further tests done. I know Marfans can affect people differently, but there is a serious risk of heart and lung problems which may not manifest themselves on the echocardiogram, but which could cause sudden death. Good luck with your condition and I hope you are lucky and only have mild symptoms. Irene. My son, also 17, has also been diagnosed with a connective tissue disease with muscle biopsy tests being done at the moment. He too has several features of marfans. He also has had several echocardiograms which have had minor pauses, but are considered to be normal. Until recently he did not have any pain, but developed a large number of twitches. For the last few months the pains he gets have increased, particularly in his chest, but still the echocardiograms show no sign of there being any problems. He is tomorrow having an MRI and MRA scans to check for dural ectasia or widening of the foraminae. I do not want to burst your balloon, but would seriously advise you push to have further tests done. I know Marfans can affect people differently, but there is a serious risk of heart and lung problems which may not manifest themselves on the echocardiogram, but which could cause sudden death. Good luck with your condition and I hope you are lucky and only have mild symptoms. Irene.

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