sallyannsturgill Posted May 19, 2004 Report Share Posted May 19, 2004 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 Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted May 19, 2004 Report Share Posted May 19, 2004 It's very hard to say why exactly 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.organd also read through the main sections of the primary DINET site on POTS and NCS. http://www.dinet.orgalso, you can check out http://www.ndrf.orgWelcome 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 Quote Link to comment Share on other sites More sharing options...
futurehope Posted May 19, 2004 Report Share Posted May 19, 2004 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! Quote Link to comment Share on other sites More sharing options...
ethansmom Posted May 19, 2004 Report Share Posted May 19, 2004 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. Quote Link to comment Share on other sites More sharing options...
sallyannsturgill Posted May 19, 2004 Author Report Share Posted May 19, 2004 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 Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted May 19, 2004 Report Share Posted May 19, 2004 I use Dr. Michael Goodkin at Crozer Chester:Michael B. GoodkinCardiology, Internal Medicine30 Medical Center Blvd. Suite 203Upland, PA 19013610-874-6262POTS & NCSyou can find more doctors on the physicians page of the main dinet site:http://potsplace.com/physicians.htm#United%20States Quote Link to comment Share on other sites More sharing options...
Sara831 Posted May 19, 2004 Report Share Posted May 19, 2004 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. Quote Link to comment Share on other sites More sharing options...
sallyannsturgill Posted May 19, 2004 Author Report Share Posted May 19, 2004 i love you so much sweeetie!!!!!!!!!!!! i am always herefor you. we will get through this together . keep up your sense of humor.who knows maybe we can do a "standup"(sitdown)comedy act together.that is if we can remember the skit. i love you ilove you i love you. love mom Quote Link to comment Share on other sites More sharing options...
ethansmom Posted May 20, 2004 Report Share Posted May 20, 2004 You guys are too cute Quote Link to comment Share on other sites More sharing options...
KarenLorrel Posted June 11, 2004 Report Share Posted June 11, 2004 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 Quote Link to comment Share on other sites More sharing options...
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