mrsdavidson8605 Posted May 23, 2008 Report Share Posted May 23, 2008 Sometimes I get really worried that I am going to have problems with this POTS thing forever. I know there are some who have recovered, but not many. Just wondering how long everyone has had it? I've officially had it 1 1/2 years, but I think it's actually been longer than that. The doc at the mayo said that if it's caused by having Mono that it usually runs it's course between 2-5 years. That seems like forever to me!!! I really want my life back! (don't we all!!) Quote Link to comment Share on other sites More sharing options...
Ernie Posted May 23, 2008 Report Share Posted May 23, 2008 Hi,I've had it all my life but I became completely disabled overnight on December 12th, 2000.Before that, I had a quasi normal life, was working 80 hours a work and was a workaholic. Quote Link to comment Share on other sites More sharing options...
Megan Posted May 23, 2008 Report Share Posted May 23, 2008 I was diagnosed a little over 2 years ago, but I'm sure I've had it longer than that. It is frustrating. I just try to take things one day at a time.Meg Quote Link to comment Share on other sites More sharing options...
persephone Posted May 23, 2008 Report Share Posted May 23, 2008 14 years.It gets better but is cyclical - I have had significant remissions but also crashes. Quote Link to comment Share on other sites More sharing options...
flop Posted May 23, 2008 Report Share Posted May 23, 2008 Officially diagnosed January 2005, became ill November 2004 (viral infection) but had a tachycardia when standing up since at least 2001 (viral infection).Flop Quote Link to comment Share on other sites More sharing options...
sarct Posted May 24, 2008 Report Share Posted May 24, 2008 I have had this since childhood, but recently got diagnosed with it this year. I recently lost a lot of weight, and now it has become life changing. I pray I can find a way to get on with my life and that I can live a full life. My biggest worry is that I am just going to get worse and worse, and i worry if all this drain this condition puts on my body will take my life sonner than should happen. Like with every episode I get months or years taken off my life span. Quote Link to comment Share on other sites More sharing options...
kitchmill Posted May 24, 2008 Report Share Posted May 24, 2008 All my life, or as long as I can remember. But I was only diagnosed about a year ago and I'm currently 32. Thankfully, I am not debilitated by this, but it does severly limit my life. Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted May 24, 2008 Report Share Posted May 24, 2008 my whole life but only figured that out 12 years ago..been disabled 18 years (first with Chronic mono etc)As a kid had exaggerated motion sickness, CRIPPLING shyness (like perpetual stage fright) digestive issues. ALWAYS low energy as a kid, adult and working person.Gotten worse with non fainting POTS in last 10 years and especailly last 5 years. Official ANS dysfunction dx after 1998 TTT. Quote Link to comment Share on other sites More sharing options...
Rachel Posted May 24, 2008 Report Share Posted May 24, 2008 I was diagnosed with NCS when I was 15 and diagnosed with POTS when I was 16, though I had symptoms much earlier than that. Many people do recover from POTS, but once they're healthy again you don't usually find them on a dysautonomia forum. They're out working, going to school, spending time with family and friends, etc. So don't be discouraged if everyone here says they've been sick for a looooong time. Those who have get better don't have the need to come here for support.I hope you recover.Rachel Quote Link to comment Share on other sites More sharing options...
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