ramakentesh Posted March 15, 2012 Report Share Posted March 15, 2012 Whic do you think best describes your disease course??1. Sudden onset/ abrupt onset2. Gradual onset3. Always had itAnd:1. relapsing / remitting2. progressive (no let up and worsening - lets hope not)3. good days, bad days4. slow improvement over the course of years5. relapsing / remitting but with progressive features6. no change from onset Quote Link to comment Share on other sites More sharing options...
puppylove Posted March 15, 2012 Report Share Posted March 15, 2012 Gradual onset and good days bad days. Quote Link to comment Share on other sites More sharing options...
stacdliw Posted March 15, 2012 Report Share Posted March 15, 2012 Gradual onset, with slow improvement over years and now with good days and bad days. Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 15, 2012 Report Share Posted March 15, 2012 All of the above? LOL Some features I've had gradual onset, but others had a more abrupt onset.Seems like I'm both good days, bad days but then also relapsing/remitting. I'm not totally sure whether I'm just becoming more of a wimp and giving in easier or whether I'm having progressive features but on "bad days" there is no change from onset or it's worse than onset. On the other hand, even on my best days, I'm nowhere near where I was before the abrupt onset symptoms started.Rama- Now I have a question for you? You said this past two months you didn't exercise but just moved a lot during the day but then said that you thought exercise was critical? So does that mean you didn't run 5 km as you had been doing, but you were participating in activities of daily living...like cooking, mowing the grass, etc so you were active, but not doing a regimented exercise program??? Quote Link to comment Share on other sites More sharing options...
jenglynn Posted March 15, 2012 Report Share Posted March 15, 2012 As far as I can tell, I have always had it and it has been progressive and up until now has been worsening. Have not had any improvement up to this point- but certainly hope that this won't last forever.Jen Quote Link to comment Share on other sites More sharing options...
Tautologist Posted March 15, 2012 Report Share Posted March 15, 2012 Sudden onset and a good days/bad days pattern Quote Link to comment Share on other sites More sharing options...
peregrine Posted March 15, 2012 Report Share Posted March 15, 2012 Sudden appearance and good days/bad days (as in "it's always bad, no remissions, but some days are okay and some ****"). My personal theory is that I've been pooling for some time, either due to small fiber neuropathy-induced pooling or connective tissue issues, and that starting Cymbalta messed with my sympathetic nervous system, making the issues rise to the level of observable and problematic. The only reason I've got this hypothesis in the first place is the weird hyperadrenergic/pooling thing my neurologist went on about after my testing, and the sudden appearance of symptoms despite no obvious insult (viral illness, accident, other sickness, surgery, bed rest, etc) :^) Quote Link to comment Share on other sites More sharing options...
bunny Posted March 15, 2012 Report Share Posted March 15, 2012 Always had it. The more I dig into my past, the earlier I see the signs of it in my life. Gradual improvement over time. I was quite surprised that symptoms of POTS/NCS didn't drastically improve upon recovery from anorexia, but digging deeper I find that POTS existed before onset of anorexia. Quote Link to comment Share on other sites More sharing options...
abbyw Posted March 15, 2012 Report Share Posted March 15, 2012 I would say sudden onset, but when I think back I was always bad at exercising and I was always sensitive to epinephrine.As you know by now, I am pretty new to this, but I have had major improvement, with some bad days. ( I don't even know why I keep coming back here, but I am worried about all of you and curious about any new breakthroughs!) Quote Link to comment Share on other sites More sharing options...
firewatcher Posted March 15, 2012 Report Share Posted March 15, 2012 Always had it, but relapsing/remitting with progression. Birthdays are like that too. Quote Link to comment Share on other sites More sharing options...
jangle Posted March 15, 2012 Report Share Posted March 15, 2012 Mild constant symptoms for a few years. Then a temporary elevation for a few months that went away for a year. Then a gradual progression to max symptoms over the course of a few months. Then a VERY gradual decline (almost imperceptible, seems almost like constant symptoms) for 6 years. Now a significant decrease in baseline symptoms with daily (hourly) variation. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted March 15, 2012 Report Share Posted March 15, 2012 gradual onset (think I had mild symptoms starting as a teen that then came and went over years with first significant symptoms in my mid-20s--then severe onset during pregnancy); slow improvement since severe episode with pregnancy, but still have relapses Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 15, 2012 Report Share Posted March 15, 2012 Looking back there were signs, then came part 1 of the illness in my 20's which was sudden and then part 2 in my 30's which was also sudden, but much more severe with new crazy symptoms. I would say it's been progressive with good days, bad days. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 15, 2012 Report Share Posted March 15, 2012 Subtle signs for about a year, then abrupt onset from having labs drawn. Then a slow decline over the last few years. Have been pretty much house-bound for six years. Never have a "good" day where I can shop, and definitely could not work anywhere but this recliner! My days are consistent. I don't have days where I can clean house or exercise, so no relaps/remit scenario. Quote Link to comment Share on other sites More sharing options...
forevertired Posted March 15, 2012 Report Share Posted March 15, 2012 My disease course started with a gradual onset, and is currently relapse/remitting with progression. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted March 15, 2012 Report Share Posted March 15, 2012 Sudden onset, good days bad days. Some improvement lately. Quote Link to comment Share on other sites More sharing options...
jackiemxoxo Posted March 15, 2012 Report Share Posted March 15, 2012 very abrupt onset, I slowly improved over a period of time and now I have good and bad days. Quote Link to comment Share on other sites More sharing options...
issie Posted March 15, 2012 Report Share Posted March 15, 2012 Rama,Since you started the subject, what do you feel your response is/was?I think I've had mine forever - was probably born with it. Have had periods of remission - but, only to a degree - never complete and have had times of near total impairment/disability. Up and down all the time with varying severity. Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 15, 2012 Report Share Posted March 15, 2012 I think I've had it all my life but very mild and relapsing/remitting until 4 1/2 yrs ago. Then, wham! It has been progressive from that point forward. I do have good and bad days but I have never had a day of real "wellness" for the last 4 1/2 yrs. Quote Link to comment Share on other sites More sharing options...
hholmes13 Posted March 16, 2012 Report Share Posted March 16, 2012 Mine was a sudden onset that knocked me out of commission for a while and then some improvement with meds. Now I have quite a mix of good/bad days but have not come anywhere near to where I used to be. I've been pretty symptomatic for the past few weeks and am hoping that it's going to let up soon! Quote Link to comment Share on other sites More sharing options...
roxie Posted March 16, 2012 Report Share Posted March 16, 2012 Sudden onset and good/bad days & sort of relapsing/remitting.. I've never had a full remission or even close to one but I've had better periods over the years Quote Link to comment Share on other sites More sharing options...
heathmcev Posted March 16, 2012 Report Share Posted March 16, 2012 Gradual onset which seems to be mildy progressive.Mine started I believe with stress-related GI issues around 13 y/o (dx'd as IBS as a teen), then progressed into other symptoms into my 20s. By 27 I was getting pretty sick; by 30 stopped working full-time. Now 36 and a lot worse than even 2 yrs ago. I have to believe it will improve someday (soon)...(null) Quote Link to comment Share on other sites More sharing options...
goodnuff77 Posted March 16, 2012 Report Share Posted March 16, 2012 It started for me in 2008, One day I was working the next I was a mess. It seems like new symptoms keep popping up daily. Then some of the healthproblems I thought were fixed or under controll are all comming back full steam. Hasn't let up at all since my first symptoms started Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 16, 2012 Author Report Share Posted March 16, 2012 As for me:Sudden onset - although some weird migraine-type symptoms for a few years prior. Developed strange reactions sometimes to caffeine for about a year in advance.Relapsing remitting most definately - my POTS seems to follow the description provided for the AAG - 3 months of severe acute symptoms on relapse, followed by gradual improvement - usually improves over a period and then I get remission for a while before I relapse again. Then it waxs and wanes with Ankylosing SPondylitis.Strangely I now realise I had mild Livedo reticulitis on my palms since i was a kid. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 19, 2012 Author Report Share Posted April 19, 2012 Mine started I believe with stress-related GI issues around 13 y/o (dx'd as IBS as a teen), then progressed into other symptoms into my 20s. By 27 I was getting pretty sick; by 30 stopped working full-time. Now 36 and a lot worse than even 2 yrs ago. I have to believe it will improve someday (soon)...Sounds quite similar. I used to get stress-related IBS when i was in my late teens. But first symptoms POTS was 26 I think although I was tired one of the years at college. wax and wane and at times remissions but relapses and i wonder whether they are getting worse each time... Quote Link to comment Share on other sites More sharing options...
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