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:angry: i was diognosed with ncs about 6 months ago,i have felt worse and worse everyday since my first episode.i thoutght things couldn't get worse.but as you all know by now it can.last week i found out my 15 year old daughter has ncs,she passed out on tilt less than 10 seconds.does anyone have any idea why we are both being affected so hard and all of the sudden. thanks
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It's very hard to say why exactly :angry: But there are genetic forms of dysautonomia...and there are genetic disorders that result in autonomic problems such as Ehlers-Danlos (which I have, as does Michelle, the site owner).

Sorry you're both diagnosed. The only good thing is that at least your daughter can get a head start on getting treated. In addition to this site, you shoudl check out http://www.dynakids.org

and also read through the main sections of the primary DINET site on POTS and NCS. http://www.dinet.org

also, you can check out http://www.ndrf.org

Welcome to our board, but so sorry it's because both or you are both ill. The members of this board have a wealth of information...so ask away!

Nina

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I'm certainly no expert on the subject, but the first thing I would suspect is environmental exposure to something in your home, such as "toxic" mold from your air conditioner or growing in your walls. I saw something on TV about it the other day and I really know nothing about it, but I thought that all of us would do well to think of chemical exposures in our homes, lawns, cars, pets or on our food. I know that I have been using a 6 - 7 year old air conditioner in one of my rooms, and it certainly is spewing out allergens as I always react with allergy symptoms when it's turned on. Time to get a new machine for me!

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I would tend to look at an environmental trigger as well- have you moved recently, or made any significant changes to your lifestyles? It's not uncommon for a mother-daughter pair to both have POTS/NCS, but it is unusual that it happened at the same time. Maybe your doctor has some insight on that.

I have been following your posts and of course your wonderful e-mails, and i wish you two the very best- please keep us updated on your condition and always feel free to write with any questions.

:)

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thanks to everyone for your replies. i have asked my doc about environmental things being the cause, he told me that is not a possibility.he said sometimes it can be viral .he really doesnt have much to say about the whole thing , he just keeps telling me to take more inderal, it does stop the passing out, but it does nothing for the nausua and dizziness and brain fog . he diognosed me with ncs but believes me and my daughter have "a ball of things going on" i am not sure he is very knowledgeable with this dissorder ,when i tell him about all the other symptoms i am having he looks confused and replies"i dont know why you are having all these other symptoms"anyone know a good doc in the newark deleware ,elkton maryland area?

thanks again good luck to alll of you

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I use Dr. Michael Goodkin at Crozer Chester:

Michael B. Goodkin

Cardiology, Internal Medicine

30 Medical Center Blvd. Suite 203

Upland, PA 19013

610-874-6262

POTS & NCS

you can find more doctors on the physicians page of the main dinet site:

http://potsplace.com/physicians.htm#United%20States

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:) I Love You Mom! Hang in there, you are a really strong person for dealing with what you go through everyday, but amazing for dealing with my condition and supporting me as much as you do. You are the best mom and friend anyone could ever ask for. I know how much you suffer, and it feels great for me to know that there is someone so close to me who knows exactly what I am going through as well. Thank you so much, you are my angel on Earth, I Love You. ;)
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  • 4 weeks later...

Mightymouse..You mentioned Elhers-Danlos...I am new to all this but this was one of my diagnoses too. Dr. Grubb said, POTS, Elhers-Danlos and hypermobility joint syndrome.

I really am very confused. How do all of these fit together?

I have read a lot on the websites but still unclear. Are thise 3 different disorders?

If you could clear this up for me...I would be VERY gratiful!

Lorrell

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