Another Poll

[abetterjulie]

I am attempting to get a view of how long we have a diagnosis to see if there are many of us out there past 10 years. I recently read this in an article: Symptomatic autonomic neuropathy, however, has been shown to have a poorer prognosis, revealing a 10-year mortality rate of approximately 27%.

I plan to dig further to see where that number originated.

[toddm1960]

One thing that could throw off your results is the amount of time it took to get a diagnosis.

[sue1234]

I voted the 1-5 group, but I am at 5 1/2 years.

You mentioned the 10 year mark. That's interesting, because you need to read the article that Dana posted today at the end of her poll question "Do you have amalgams?". In her post, the first article talks about an autoimmune attack against acetylcholine receptors(I believe, or something similar). It mentions people 10 years out that can be helped IF THEY ARE DIAGNOSED WITH IT. It was saying this as that their issues had been progressing, but if diagnosed, CAN improve.

[abetterjulie]

One thing that could throw off your results is the amount of time it took to get a diagnosis.

Yes, good point. *sigh*

[toddm1960]

Nice change Julie.........and I changed my vote

[abetterjulie]

Nice change Julie.........and I changed my vote

Thanks, lol. Although, I realized "serious" could be subjective. I suppose I should have said serious enough to seek treatment...oh, well.

[Birdlady]

11 years for me this summer actually. That's probably why I'm so bitter and full of angst.

[samannran]

I'm one of those people that starting fainting as a teenager. However, I started progressing in my twenties, and it hasn't stopped yet. I'm 35. I know people who develop dysautonomia in their teens are supposed to have a better outlook, according to research, but that's not always the case. I'm sincerely happy for those who go into remission. I just wish I was one of the lucky ones.

[GingerA]

I voted 1-5 years but I have had symptoms since I was 16. As I have gotten older it has gotten worse and the last two years have been the worst. But at least I finally got a doctor who believed me and didn't try to tell me I was just depressed and needed a vacation.

[Crow]

Is POTS a form of autonomic neuropathy? (I don't know what that is....)

3 years for me (started @ age 40)

[abetterjulie]

Is POTS a form of autonomic neuropathy? (I don't know what that is....)

My POTS is a form of neuropathy (disease of the nerves) of the autonomic side of the nervous system (automatically regulated nervous system: things you don't control like heart rate, digestion, breathing). I still don't know the cause of mine, and am not sure I ever will.

[ladyt]

Symtoms has long as i remeber. Got gradually worse from my teens and up. At 20 even worse, and in 98 i got my diagnose. 2001 i think was my first bedbound spell. So been a few years. I am now 35, and still here

[yuliya]

I have become very symptomatic this past September, but the doctor seems to suspect that I have had POTS all my life, or at least very young.

[flop]

I've put 6-10 years. My POTS became suddenly disabling in 2004 following a viral infection. But knowing now that I have Ehlers-Danlos Syndrome, and looking retrospectively, I had had milder symptoms for many years. I hadn't previously realised that my fast heart rates of 130ish and feeling generally unwell a lot of the time were related to me being stood up all day. I hadn't bothered to check my pulse when I felt well (when lying down or sitting) only when I felt ill. Perhaps if I had realised it was a postural issue earlier I might have got treatment sooner, who knows??

Flop

PS - a few posts back someone asked if POTS was a form of Autonomic Neuropathy. The wording varies between doctors and hospitals but it is generally accepted that POTS is a form of autonomic dysfunction (=dysautonomia). This means that the ANS (autonomic nervous system) is not working correctly.

Neuropathy means that there is something structurally wrong with a nerve. In POTS it is often that the ANS is structurally okay but it is functioning abnormally.

Some people on the forum do have autonomic neuropathy. Some people have been diagnosed with small fibre neuropathy and/or large fibre neuropathy. The research into POTS and related autonomic problems is relatively new in medicine (since the 1990s mostly) and there is still an awful lot to be learnt!!

[sandymbme]

I have been seriously symptomatic for four years. I had fainting spells as a teenager, but these eventually resolve, chalked up to my build being very thin and therefore more related to insufficient nutrition/anemia. In theory, that should have been the end of the story. However, four years ago (almost exactly, my anniversary/birthday is coming up) I woke up on my 31st birthday with a brutal migraine that lasted 8 months and responded to nothing. After having doctors tell me the cause was everything from my VERY borderline chiari malformation/low-lying cerebellar tonsils to depression, a last-ditch trip to the Cleveland Clinic yield a tilt table test and a definitive answer. I failed the test with flying colors. So while you could say I have had symptoms for close to twenty years, the syncope episodes I had as a teen did not affect my life to anywhere near the degree it does now.

Sandy

[abetterjulie]

Sandy, that is just horrible that you had to wait that long and go through those hoops to get a TTT! Glad you finally got answers and help.

[houswoea]

I know you guys are all experts on this stuff now and probably know what you're talking about, but was it autonomic neuropathy in general or related to dysautonomia? Because if it's a general thing, there are lots of really old people or people with diabetes who have autonomic neuropathy and they could account for the 27%

[abetterjulie]

I know you guys are all experts on this stuff now and probably know what you're talking about, but was it autonomic neuropathy in general or related to dysautonomia? Because if it's a general thing, there are lots of really old people or people with diabetes who have autonomic neuropathy and they could account for the 27%

Agreed. That was why I wanted to see where we were in the whole scheme of things. From the responses, we look pretty good!

[sisblostg]

I put more then 10 years. I think it is closer to 25 years since about 25 years ago a plane had to make an emergency landing when I was a teen because of POTS like symptoms. The whole trip before the plane ride I was sick, I fainted at disney world. This was also the time I started my cycle. I really feel like for me hormones play some role in the start and with some of my symptoms. I also have been treated with POTS meds for 25 years but for the wrong dx but at least it gave me quality of life and being ignorant of the actual dx I pushed myself to do more and travel alot as a young adult even though I felt horrible. I also feel lucky I went to private school and because I was a good student they let me miss alot of school and still maintain good standing. I missed over 200 days in high school but managed to get into my first 5 ivy league choices. Now Im always scared what if I faint in front of my kids I don't want to scare them and I think I am too cautious. It was 9 years ago I heard the dr say I was OI and treated me for it. I did not heard H-POTS until a year ago which made me feel better because I was driving myself nuts why I had "odd" panic attacks that made no sense.

[Allene]

I first started getting symptoms when I was 13. I'd faint occasionally. It wasn't until I was 18 that my symptoms really started becoming a problem. I voted 1-5 years. I'm 21 now, so that's about 3 years that I've been seriously symptomatic.

[micheller]

I voted 1-5 years. It's been a little over 3 years.

[fiona-jane]

i've had these symptoms since i was about 4 or 5 years old (i'm 30 now) but up until 2008 no one believed me and was labelled an attention seeking hypochondriac. diagnosed myself with eds in 200 and demanded to see the specialist (who confirmed i was right about every condition i thought i had). finally had my PoTS formally diagnosed this july.

[heissovereign]

I have been symptomatic for 18 years. it started at six I sought treatment but they claimed it was all anxiety, but at one point due to the grace of the Lord I was treated for other issues that helped my issues with dysautonomia. but that was short lived as my parents thought like the docs so they took me off all meds. But this is the worst I have ever been. I now know that it is dysautonomia but can tell it had been progressing, I now don't just faint but also stop breathing and my neuropathy is now in my legs,feet,hands,arms,and face. Ugh and I Am only 24.

[heissovereign]

Fiona-jane I hadn't seen many people that started young like me. I was just diagnosed last year with dysautonomia I haven't had proper testing past that but until I do I am researching.

[ramakentesh]

Cant really answer as im sick for periods that go between 4-14 months four times over the last 8 years with ok periods in between.