Dysautonomia (Autonomic Dysfunction) Community
Mother diagnoses POTS when doctors can't!
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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Mother diagnoses POTS when doctors can't!

Just incredible!  This was a headline on AOL today...it just shows you the power WE have in our own lives...doctors as we all know don't always know what's going on!

http://www.aolhealth.com/2010/07/15/mom-finds-cure-for-teenage-daughter-online-after-doctors-fail-to
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I don't think this is actually all this rare.  My mom and I figured out I had POTS before any doctor did.  My symptoms all started with stomach problems too.  But great story!!!
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It's pretty sad that we're on our own alot of the time.
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I think headlines like this are a bit misleading, though.  Certainly, there are quite a few of us who stumbled upon our diagnosis (or something close ... in the dysautonomia "family") while searching desperately for answers on the internet (or at the library, etc.) when our doctors/hospitals seemed to be failing us.

HOWEVER, there is a *massive* caveat to that.  This child's mother didn't "find a cure" for her daughter.  She found a description of an existing condition that seemed to fit what her daughter was experiencing, and took her daughter to a place known for its ability to diagnose/treat that condition (i.e. Mayo clinic), where her daughter was diagnosed by qualified physicians and started on the normal treatment regimen for that condition (which, as we all know, is not a "cure" per se).  

Take another example:  me.  I found the conditions "dysautonomia" and "POTS" among my searches when I was looking for *something* that would fit what my doctors seemed to be missing.  When I asked a friend, a resident in pediatrics at Yale at the time, about the conditions she didn't seem to know much about them or think they were relevant, so I dismissed them out of hand.  (After all, I figured, if they're not teaching this at YALE, it must be "junk science," right?  Maybe something that's all in people's heads?  And I knew I had something REAL.)  In addition, it's easy in hindsight to say "oh, yeah, I figured out dysautonomia fit the bill just by finding it online almost a YEAR before my docs ever uttered the word."  But a more honest appraisal of the facts is that I also suspected other disorders including hemiplegic migraines, myasthenia gravis, and periodic paralysis (and in fact these are some of the disorders that my docs labored to help me rule out, despite the rarity of some of them).  In the end, I combined my fiercely aggressive interest in my own case with the wisdom of numerous doctors and some rather sophisticated testing to find my true diagnoses.  

While we can't underplay the role that patient advocacy or self-education plays (and what a role in that the internet has!!), it is also short-sighted to give too much credit to ourselves and dismiss the role of the medical community entirely.  We are not *truly* diagnosing ourselves, we are not treating ourselves for the most part, and in cases such as this we certainly aren't curing ourselves.  This is a cooperative system, and ours is just one link in the chain.  Sensationalist headlines, in my opinion, only serve to pit patients against healthcare workers as though our doctors and hospitals don't *want* to help us.  Their training may be woefully inadequate at times, but I don't think it is often for lack of *caring* that they fall short of the goal of making an accurate diagnosis or choosing the optimal treatment.  Do you know many people who would let a young teenage girl suffer needlessly?
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Point taken...I can see where you're coming from.  I didn't see much substance in the article in general, and specifically about the "cure".
I do have to say I have found that my doctors, even though they admit themselves that they are not experts in any of this, have treated me with a caring and understanding manner.
I think I have been lucky...and fortunate not to have had to endure dismissive and condescending doctors like so many members of our community have.
I do think we have to remember that we are partners with our doctors...and I can only hope everyone finds the ones they need :)
Stephanie
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Stephanie,

Sorry, I should have been more clear.  My post wasn't addressed to you for your response to the article (or even for posting it in the first place), but rather was addressed in general to the authors of the article itself.  I found their title (and some of the wording of the item itself) sensationalist and misleading.  They had a doctor add as the *final* part of the item a point about the dangers of self-misdiagnosis, almost as a "throwaway," considering how hard they shoved the point about the mom "curing" the daughter down people's throats up to that point.  Stuff like that really gets to me ... you know, bias in what is supposed to be "journalism."  Journalists KNOW better than to pull that; they're trained on how to write from a neutral perspective in school, but all that seems to go out the window when it comes to trying to get more and more readers/viewers.  Sensationalism sells, apparently.  Ugh.  It's particularly sickening when the consequences are highest, such as in political and medical reporting, when people are *really* relying on these journalists for facts.

At any rate, my apologies if it seemed like that was directed at you whatsoever.  It seems to me, for what it's worth, that all of us regulars here are well aware of the balance between patient assertiveness and skilled, caring healthcare.  If any of us thought we could go it alone, we wouldn't be here.  :-D

I hope your New Year is off to a great start.  Thanks for the kind words of encouragement on the new health page, by the way!
-Heiferly.
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Hi there :)
No problem at all...even though I thought you were responding directly to me, I wasn't offended at all!  I know you are not confrontational or unkind in any way.  I've always found your responses not only informative, but compassionate and respectful.  And when you write, I listen!  You know SO much more than me and any point you make is never going to fall on deaf, or brain-fogged ears, lol!

My new year is off to a good start...and I hope yours is too :)
Stephanie
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Yes, I believe this year is off to a good start for me as well.  I still have one more "Christmas" left to celebrate!!  We're leaving early tomorrow morning to go one state over to do "Christmas in January" with my sister and her hubby!  My mom and her husband, who live in yet another city from either my sis or I, are meeting us at my sister's to celebrate with us and enjoy my sis's cooking.  So the holidays are still going for me!  (I won't be out of town long, so I doubt y'all will even have time to miss me.)

In addition to that, although I've caught a little cold (thanks a LOT, Mr. McDreamy, hahaha), I think I'm starting this year off healthier overall than I was at the start of last year (when I was struggling with some wicked infection/virus issues), so it's nice to be able to compare and say—I'm doing BETTER for once!!

I saw my neuro-ophthalmologist today and it turns out I *don't* need to trade in my glasses for a stronger pair like he'd anticipated when I got these ones a few months ago!  The initial ("partial") correction of my latent hyperopia has fixed my vision to 20/20 and resolved the symptoms of eye strain I was displaying before, so I can stick with this Rx.  The only "bad" news is that I have developed a bit of dry eye, but so far I just need OTC drops so they gave me some different samples of those so I can see what kind work best for me before I buy some.

So overall, I would say that there are more pluses than minuses in 2011 as of the 3rd.  If things keep going this way, this is going to be a MUCH better year than 2010.  :-D  I hope it is for ALL of us!!!!

Hugs,
Heiferly.
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