Dysautonomia

Harmony · Feb 7, 2005

Could someone please explain to me what is Dysautonomia and how it is related to MVP. Mitral Man wrote that NYU has opened a Dysautonomia center for children. This really confuses me as, if dysautonomia is related to MVP why only open one for children. I have seen several Cardios at NYU including Dr. Colvin who wants to operate on me as I have MVP with severe regurg.

hensylee · Feb 7, 2005

www.ndrf.org go to this site and you will find much info. Dr Rich in about.com has a site called heartdisease/cardiology. He wrote a whole article in his weekly series for me because of my brother who was diagnosed with this some yrs ago (and I think I put it here in VR but I can't find it - maybe someone else can locate it). If you go to Dr Rich's site, he will tell you how to find it in there. It's very, very informative. It's a troublesome condition. My brother's was found by a dr who has it. I am no longer sure that I really believe in it, but 'they' say it's for real. It's also called 'old soldier's disease' and other names. But the ndrf (National Dysautonomia something Foundation) site can help you find out more - and maybe talk to some who have been dxed w/it. I hope dysautonomia isn't what you have. Please tell us more as you know more.

hensylee · Feb 7, 2005

Here's the article:

http://heartdisease.about.com/cs/womensissues/a/dysautonomia.htm

Looks like there has been much more added since he wrote the above article. To find them, click here:

http://heartdisease.about.com/sites...nomia&SUName=heartdisease&TopNode=3370&type=1

prttyprttyprncss · Feb 7, 2005

Great sites!

Great sites!

Thank you for the links, Ann! They were great and gave me some very good pointers in following up and making sure my cardio/internist and I are on the same page as far as treatment and testing goes!

Shelia

ladyofthelake · Feb 7, 2005

Harmony,

Now do you need more info on this?? If you do you can just call me and I will send you the other 700 links I have

!!! Hope you are feeling great and TTYS

anonymous

hensylee · Feb 8, 2005

Dr Rich also has a forum where you can go to ask him your questions - then he answers you personally in the forum, and within a short time. He will not give medical advice, tho - just general answers. He is an EP cardiologist, writes books for other cardiologists, advises medical people, etc. He has answers for every cardiology question. He has helped me so much, especially regarding my brother. I found him the same time I found VR (5 yrs ago), so he's been around awhile.