It's A Family Affair

[maryfw]

I am fairly confident that I have had NCS all my life. Definitely since I was 15 years old at which time I was diagnosed with Mitral Valve Prolapse which I now know I do not have. At 26 a doctor told me I was hyperventilating. I didn't waste my time or money with him anymore. Finally at 39 I took a tilt table test and was officially diagnosed. I have never completely passed out and I think that is why it took me so long to be diagnosed. I also have fibromyalgia which I believe started at 17 years old. Unfortunately my 18 year old son was recently diagnosed with both Fibromyalgia and NCS. He has had to withdraw from school and do virtual school. My hubby has had Fibromyalgia for 22 yrs and now has NCS. My 21 year old son is the only one of us who completely passes out so I know he has NCS but he has not had the TTT yet.

I hate that I have passed on this to my sons. I do realize that it could be worse. I missed 3 months of work last year because of Mono which caused my NCS to go CRAZY. One fed the other and it just got worse and worse.

I take a beta blocker. Drink 64 oz of Powerade daily and have recently gone on a low carb diet which is helping me with energy. On better days I have a cup of coffee in the morning. What I hate so much about this is that one day you can feel fairly good and 20 minutes later I need to lie down.

I like my doctor but her main concern is whether I am passing out. Since I have never passed out, my main concern is my quality of life. I will continue to experiment with things like the low carb diet to continue to improve my life. I appreciate this forum and the chance to learn from others.