Just Got Back From Doctor Exploring New Possibilities And Mvp

[jackiemxoxo]

So I finally had my 6 month checkup with my neuroendocrinologist. He did tests on me back in october when I was feeling really sick but did not have time to meet with me until now. I told him how I had now switched to a gluten free diet and the positive sjogrens test I had when I saw a hematologist back in october because of the hives I was having. He is now retesting me again for sjogrens (to make sure its positive) and retesting celiac (prob wont be positive bc im not eating gluten) to see what antibodies if any my body is making. When I first got sick with dysautonomia 2 years ago he was positive that it was not autoimmune because he did so many tests that came back negative. Now, he is still thinking it is a viral cause and I am having residuals from what the virus did but also entertaining an autoimmune link. My breathing tests from october are still showing that my valsalva maneuvers are abnormal and my body is having too much sympathetic activity. He thought about putting me back on a beta blocker but thinks it will suppress too much parasympathetic activity as well so unless I am feeling really crappy then no meds for me. They also listened to my heart and told me I probably have Mitral Valve Prolapse and this explains why I am having that sharp chest pain. He told me it is normal to feel anxious, have chest pain, and even feel short of breathe but as long as nothing is structurally wrong then it is not harming me. I feel better knowing why I am having this chest pain but it still scares the heck out of me when it happens. Do any of you have MVP? Is there anything you notice that makes the chest pain worse or better? Anyway, I feel better that I am one step closer to figuring out the possible cause of why I get sick but it still does not help the symptoms.

[bellgirl]

I have Mitral Valve Prolapse, too, and all the symptoms you are describing. I sometimes have palpatations, and of course, tachycardia. It used to wake me up in the middle of the night with chest pains, sweating, weakness, and shortness of breath. I am on clonazepam at night, and it is helping. I am also on a beta blocker, a long acting one, Bystolic, which has helped with the tachycardia. I have sleep apnea (on Cpap machine at night to help me breathe), and asthma on occasion, too, and yes, it is scary, but the good thing is that we don't have any more chance of having a heart attack than the average person, so knowing this is a relief, and I also just take slow steady breaths, pray, and rest a lot.

[issie]

Not complete prolaspe, but leakage on my part. Yes, same symptoms. I can't sleep on my left side either - makes it worse.

[jackiemxoxo]

Thanks for the responses. It is good to know that the symptoms are for the most part benign. Kim- I have heard a lot of people have success with bystolic. It is something I might bring up if I have to be on a medication again if my flare ups get worse. I am trying not be on anything because I am so sensitive to medications that most of the side effects are worse then the actual help they provide.

[Katybug]

I also have mild MVP. Cardio says it is not severe enough to be of any consequence and that many people have MVP and never know it because it never causes any problems. The severity of my prolapse was evaluated with a sonogram of my heart.