Back From Dr.

[jhjd]

So I'm back! Ended up crashing at DH's hotel (also in B'ham) right after tests before I drove back, so that was helpful. Have only good things to say about MVP/Dysautomnia clinic and Dr. Moore- First of all, their TTT is not nearly as bad as some of the ones described on here- no I.V., and fairly short. They told me that "we don't need to see you pass out to know that you could- we're not in the game of trying to see how sick we can get you." They look to see if you start the reaction and how severe it is at the beginning, but don't make you stand there for the ultimate conclusion of you passing out. So that was nice. The stress test sucked, but the nurse was very positive and encouraging throughout it. Basically, everybody was just very accomadating and- for the first time ever at a Dr.- kept asking me if I was dizzy, if I needed water, if I needed to sit down, etc., etc. Just sort of felt 'taken care of.' Plus, everything I said- about blurry vision, about fatigue, etc., etc., they were like 'yep, that's normal.'

Had a "classic" response to both the TTT and stress test. Also had a refocused Echo- said I did have mild MVP. What I thought was a little odd was that she said it was part and parcel of the POTS thing (that's not the odd part)- and that if I drank enough fluid, it would probably not show up at all. Something to do with volume of tissues and volume of blood being positively influenced by the hydration so that the valve fit more tightly? Anybody here ever heard about it? They also prescribed a beta blocker (woo-hoo- start it tonight) and gave me a diet they've made up based on sort of a zone/south beach theme- the idea being that you balance proteins, fats, and carbs in a 30/30/40 ratio, focusing on what's good for you in all those areas.

[mom4cem]

Glad you had a good experience. I love them there... I have MVP too. The way the nurse explained it to me was when you are dehydrated your heart shrinks and the valve flaps, becomes loose and may allow some blood to backflow. The belief is when you are properly hydrated your blood volume is increased and your heart size becomes normal and the floppiness of the valve lessens. It becomes tighter. They also told me that POTS is very similiar and that many that have MVP have POTS and or vice versa. They explained the blood pooling when we stand, why I feel horrible when standing in a warm/hot shower etc.

Did they have the clips on your nose and the mask on your face during the exercise stress test? The last one I had done there was like that.

It's nice to have someone who understands this disorder, even a whole center and that they are available to talk to and be seen at within a reasonable amount of time. I would love to have them up here Till then, I will have to travel when I am able.

Hope the beta blocker helps. The little that they had prescribed me helped. I also do the balancing of the foods, and it has helped also. I do less carbs and practically no sugar and it has helped with my heartrate a bit. These two links might explain it better.

http://www.mvprolapse.com/article_glitch.html

http://www.mvprolapse.com/article_tired.html

[smiles]

I love Dr. Moore. I am from Phenix City, AL. She is wonderful: understanding, knowledgale, sympathetic... The whole staff is awesome. My problem is that my problems have exceeded her expertise. In fact UAB Hospital in Birmingham said they have even exhausted their expertise for me and I am hunting any other facility that may be able to help me.