dysautonomia resolution

[bamagirl]

I recently saw a dr who is somewhat familiar with dysautonomia and keeps close tabs with dr. grubb and he informed me that 80-90% of people get better and the autonomic nervous system resets itself in a few years. My question is: If this resolves in time, why have I over the past five years had more and more parts of my body effected by this? And why do I feel worse now years later more than ever before? How do you guys feel about that theory and do any of you feel or believe you will resolve in time? Mine came on suddenly and I wasn't born with this. No-one in my family has ever had this either.

bamagirl

[futurehope]

I suppose it's true for some people and not for others. Until I feel comfortable that the doctors have more information on the CAUSES of this condition especially in each particular case, I don't see how they can make predictions.

For example, maybe if the cause of your dysautonomia was a virus, and they knew that viruses go into remission, then maybe you could "recover". If, on the other hand, the cause in your case is an autoimmune process, then I'm skeptical about "getting better". I suppose you could go into remission for that as well.

I don't see how doctors feel comfortable at all in this instance. I thought they don't know enough. Maybe they have some study they're referring to that I'm unfamiliar with.

[Sunfish]

the 80-90% number is not a number that i can see dr. grubb putting forth. maybe many years back, or maybe for a certain population or whatnot but not in general. i WISH it was right on but it's not.

when i was first diagnosed with NCS dr. grubb thought there was a chance i would "outgrow it" to a degree - not that i wouldn't always have some tendency toward it, but that i might be able to be med-free and generally not have to consider it on a day-to-day basis. that was b/c of my certain age, the fact that i felt generally fine between faints &/or crashes, etc, etc.

that didn't turn out to be the case for me & now i'm debatibly in a much different category of being considered to have a progressive neuropathy. some docs are deeming it autonomic failure. and regardless of what anyone wants to call it they all agree that i've gotten worse over the years and at an increasingly rapid rate with progression to more body systems in the past year and a half. and having seen a number of the "autonomic gurus" as my own docs over the years, not one of them thinks that my problems are now going to resolve aside from new finds in terms of pinpointing the specific cause/etiology & treating that; that's not to say we're not hopeful for improvement of any measure, the bigger the better, but no one thinks i'm going to be "all better."

so...i "get" where you're coming from in terms of frustration. but i also wouldn't get hung up on numbers. your doc may be great but those numbers just aren't the reality unless referring to a specific (not sure which) group....maybe all people with any OI, regardless of if symptomatic?? who knows. and even if the numbers were right on, they have little meaning for the other 10-20%. just my 2 cents...

melissa

[michiganjan]

I have had POTS for more than 25 years. Got it in my early 30s as sudden onset after a virus. Still have it. Over the years there were a couple of times I seemed to get better and one stint where I did not take meds and was pretty normal. As I have aged, I have gotten worse. Now 59 years old and much less able than when I was younger.

I personally do not know anyone who has gotten completely better. There is a distinct absence of posts from people who had POTS and recovered completely.

HOWEVER, there are some I know who have improved enough with meds to live a pretty much normal life. So there is hope. And right now, there is a lot of new information from recent studies--we are getting closer to understanding what POTS and NCS are all about. Surly the more doctors understand the underlying causes, the better they will be able to treat us. So there is real reason for hope.

[ramakentesh]

Doctors who really know POTS tend to tell you that it 'can' get better after a period of around 4 years - and that spontantious remission is possible - but that usually people dont progress and that you learn to live with POTS.

Ive never met anyone who has completely recovered permanently from pots - most improve enough to live their lives but its always in the background.

Im not saying this will be your case, but there is no studies or research that suggest 80-90% of people fully recover.

[gwen]

I've read where some people with chronic fatigue get better, but I think I't a roller coaster day to day,week to week, etc. My cardi has left it as, lets hope we can handle the sympyoms, Its not going away. I share all my new info with her and she also research's. Its like diabetes , or chronic depression, etc. we try to treat the best we can and hope that tomorrow is better. I've never read where it goes away. would love to know where his research is so could see the details.:-)