cattale Posted May 31, 2005 Report Share Posted May 31, 2005 I was diagnosed with POTS in January 05', but now they see I was right when I said, it has been progressing with my years. My 3 children were born with this, as I and they are progressing as well. Does anyone here have PAF or know much about treatment if there is one? I go to the Mayo Clinic Thrusday to see my Neurologist and would like some ammo to take with me. Thanks!Catherine Quote Link to comment Share on other sites More sharing options...
avais1 Posted May 31, 2005 Report Share Posted May 31, 2005 Have you been to the NDRF website? www.ndrf.org. They might have info in addition to the info here on Dinet. Quote Link to comment Share on other sites More sharing options...
danelle Posted May 31, 2005 Report Share Posted May 31, 2005 Catherine,How old are your children, are they boys or girls, and were they diagnosed at birth? When did you start having symptoms of POTS? Have you been diagnosed with PAF? Sorry for all the questions. I just have been going down hill steadily for about 2 yrs now and am concerned about PAF too-but my dr doesn't think I am there yet. Also my 17 yr old son was just dx with POTS as well, so far, my 19 yr old son hasn't been and doesn't seem to show any signs right now (thank goodness!) Derrick is having a hard time too, it makes me so sad. This past week as been particularly bad for the two of us. It's ironic but we seem to have bad days on teh same day. (Not always-but frequently) of course here lately all of mine are bad.Thanks,Danelle Quote Link to comment Share on other sites More sharing options...
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