Mitral Valve Prolapse and Dyautonomia Clinic

[purplefocus]

Hey everybody,

I finally kept my appt. with the MVP and Dyautonomia clinic my doctor had referred me to. I think I had cancelled 3 times. I did find out some things that were helpful but not really any more information that we already have here. Here is what they did.........I had to answer an 164 questionaire. It ranged from parents history to if you had been sexually abused................from a to z. I couldn't see how alot of this would help but I did it anyway. The had informed me to expect to be there 2 to 4 hours. Let me tell you what they did. First they did an echocardiagram....then another tilt table test (it was nothing like the previous one I had,I did lay on the tilt table but this one lasted maybe 3 minutes, she stood me up checked my blood pressure, laid me down, checked my blood pressure and then I got up) Then I had to get on the tread mill and put the breathing piece in my mouth while I had a nose clip on and was hooked up to several wires. Guys, I knew I had deconditioned over the past year and half but I had no clue to how much............my O2 sats dropped down to 52, you like this to be 100. Well after I finally got off that contraption and realized I was not gonna die then I had to go talk to the doctor with all my new found results. I do have to admit it was nice to talk to someone that when she heard the word dysautonomia she didn't say "What?". She reviewed the medication I was on and adjusted them alittle, nothing new just a little adjusting. Told me how important it was to get off my butt and start moving and gave me quiet a strick little regimen to get started reconditioning myself. Something I think I actually can do. We talked about the symptoms I was having and then I left. I was a little disappointed. I guess I went in hoping for a miracle drug. I think the only thing I got from my visit was a pep talk to exercise. Oh well guys I just wanted to share this with ya. Oh yea, she wants to see my in 6 weeks to see how I am doing? Don't know if I will go or not .

Paige

[Gena]

Hi Paige,

It's nice to see you posting on the board. I don't think I've seen you post in a while. Anyhow, I went to the same clinic you did. I saw a Dr. Sawyer there, (who just recently retired). She also has dysatuonomia, so it was great to talk to someone who could really relate. Their tests at that clinic aren't as sophisticated as the ones at Mayo, but it does give them all the basic readings they need to know I think. (And that questionnaire, boy is that a doozy! I'd like to see the results of all the data they collect on patients and see if maybe there's a trend or commonality in there somewhere among us? In fact I was seriously going to call to see if they have ever published a summary of the results or find out what they do with the data.)

Sorry that you were disappointed, and that you didn't get your "miracle drug", but maybe the pep talk to start exercising again can do miracles for you?? There are several people on the board that have recently started taking small steps at getting physically fit, and they say it has really helped, so I hope you get the same results! Hang in there.

[biatecki]

O2 sats dropping to 52? I would be seriously worried by that and taking myself to the nearest Pulmonary Doc. Those levels would require most people to be on 02,at least while they were active. Please make sure this is addressed and soon!

Margaret