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?? For All Of U Who Have Been On Here Awhile


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For all of you who have been on DINET awhile..... Have there been a significant amount of people either yourself or others, that were originally diagnosed with POTS and later learned that it was Parkinson's, Pure Autonomic Failure, Multiple System Atrophy etc.?

I was recently told that I do not meet all of the markers for POTS but Adrenergic Automomic Polyneuropathy and Cholinergic Autonomic Neuropathy with Synccope. We all have so many symptoms...just wondering?

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This can be so difficult and leave so many people searching for answers.

I have a nurse friend who works-she's very thin-gets symptomatic-but is still going.

She was told she had dysautonomia years ago because her pupils were different sizes.

She was functional for many years and used to run.

Now she still walks.

She says she attributes her level of function to how active she stays.

She has some scary low dips in blood pressure but usually thank goodness they occur after she gets home from work.

She also described getting so scared because her knees just uncontrollably started shaking.

She just went and had a tilt test and passed it but she is in incredible shape for having dysautonomia.

So she has some symptoms that she knows as a nurse herself are not normal at all

But when she goes and has tests they really don't find anything.

I think her case is almost like a success story that for whatever reason despite having been diagnosed years and years ago-her overall condition has stayed relatively stable and she seems quite functional despite experiencing extreme fatigue on her days off.

She says it takes those days to gather enough energy to go back and work her scheduled days. I can relate to that feeling from when I was still working.

Despite not having the episodes where I just felt like I needed to lay down I was just getting to a point where I never felt like I completely recovered from my fatigue on my days off.

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This is hard to answer because there are some on this forum who eventually find an underlying cause to their POTS which ended up being a more serious type of diagnosis. But most of us have some type of diagnosis tied in with our POTS, like I have small fiber neuropathy which causes my POTS.

Another consideration is that most folks with POTS probably still lead relatively normal lives and so they wouldn't seek out the help of a support group/online forum. I'd hazard a guess that the POTS population represented by the DINET forum members would the most ill, in general, of the POTS population in general.

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Another consideration is that most folks with POTS probably still lead relatively normal lives and so they wouldn't seek out the help of a support group/online forum. I'd hazard a guess that the POTS population represented by the DINET forum members would the most ill, in general, of the POTS population in general.

VERY interesting. I never considered that possibility.

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Oh I forgot to say I was thinking about all the people who have been through this forum since it began in 2004(?) and wonder what happens to people? I was reading some early posts by people who are aren't here anymore... pretty much covering the same ground, asking the same questions etc. that I have seen here this past year... and I wonder what happened to them? Are they still sick? Did they find answers, get better and move on or is it that they had nothing left to ask, nothing left to say, still sick, just saw no point in participating here anymore?

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In regards to thankful's post, that is probably me as well. As a teenager I fainted occassionally, can't stand heat, have migraines, etc.. But nothing that was ever debilitating enough to interrupt my daily life. Then most symptoms went away as I got older. My daughter and mother also have/had these strange symptoms or occurances as we thought they were. Until my son was diagnosed because his symptoms are so severe, we never really knew anything was wrong and that it was all tied together.

We still find things that make us say 'A HA!'. My mother was hypermobile, she didn't sweat,etc.. Now we know what it all is, but we are all functional and it doesn't impair us daily. Without someone in the family-my poor son- having it so severe we would still be oblivious.

Christy

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I think for me I feel like sometimes I get so wrapped up in pots its all I think about, sometimes I feel like I have to go off for a month to get myself to think other things besides my health. Maybe thats what happened to some. I have gotten so much support here and answers but reading everyday about others not doing well is sad and get to you after a while. I don't know how some of you guys stay on here and continue to be so helpful.

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I frequented this forum much more when I was new to POTS. It's been approximately 9 years since my diagnosis.

I prefer to live out my life to the best of my ability. I learned a lot on here to help me. To that end, I prefer not to frequent this forum as much any more, because I prefer to focus on other things. That's my choice. But, I did need to hear more about this ailment in the beginning, because I was scared and uninformed.

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I have been here since 2oo6. I have had confirmed that I have a connective tissue disorder with abnormalities at the cranio-cervical juncture. I didn't have trouble till late 30s, because it probably took that long for my neck problems to progress. I notice that my symptoms are indeed worse with head position!

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Wow I just spoke to that friend tonight and she's gone to a special integrative doctor who deals with difficult cases.

He is doing extensive lab work on her and is finding things out if wack.

He told her none of the tests that she had proved that she had dysautonomia. He said her tilt table results were frivolous. He went through what each doctor had told her including telling her that a stress fracture had occurred simply because she was on her feet too much.

She is in the process of having investigate what is going on. All of her hormones are out of wack and her thyroid.

He said it appears she has some type of infection or inflammatory process going on in her body.

I am excited for her and hope that he can help her get some of these things corrected and that her symptoms improve along with continuing to search for a root cause.

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I have NCS/OI and have questioned my TTT since the day I had it done. Finally I may have gotten some answers as to why I reacted the way I did...my underlying cause of my problems are HOCM (obstructed hypertrophic cardiomyopathy). Then a few hours after the TTT I had an EP study & ablation and my heart stopped a few times on top of it stopping during my TTT; the dr thinks it was just too much for my body and caused major problems throughout and my ANS to go haywire.

Up until Jan 2009, I would faint a couple of times a month and would get over the episodes. I went to this weight loss clinic that gave me meds, supplements etc in Nov 2008 - jan 2009 and I think that's what started my system failing...

After going there was the first time I felt my heart stopping. I think the meds were the accelerant (?) I think is the word I'm looking for... that tipped off my system to make it start acting up Feb it started again and by June 2009 I had a ton of things wrong and in dire health but I've had some CNS/ANS issues since I was 9.

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I've been here since shortly after my 2003 diagnosis. I have pretty much steadily improved since then, altough I have relapses that sometimes seem to come out of nowhere. However they never last very long.

I agree w Thankful that DINET members tend to be among the more ill patients and many who were quite ill did recover and are no longer using the forum.

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  • 8 months later...

For all of you who have been on DINET awhile..... Have there been a significant amount of people either yourself or others, that were originally diagnosed with POTS and later learned that it was Parkinson's, Pure Autonomic Failure, Multiple System Atrophy etc.?

I was recently told that I do not meet all of the markers for POTS but Adrenergic Automomic Polyneuropathy and Cholinergic Autonomic Neuropathy with Synccope. We all have so many symptoms...just wondering?

Who told you this?

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