Oh BTW, don't stop 'complaining'....on my account...I call it 'discussion'. I posted only because I mentioned I had a lot of stuff done recently and I know folks were wondering what all went on, and I didn't know for sure until I read it with my own eyes. That is what needs to be done. Get records, read them yourself.

Billye, you and I do have a lot in common, always have, and if you have not had an echocardiogram recently, I advise it....check out your aortic valve. Your bone issues, are a concern to me, and obviously I have bone issues coming at me down the pike too.

My autonomic issues have been handled fine....the myopathy may need more time to develop and then, an institution that specializes in this is needed...they admited it....however, the lack of follow up on a variety of cardiac issues is stunning. Genetic testing will eventually get done, and when it does, it probably won't affect treatment....at this time, I think the only other comfort measure is BiPAP....I think I might sleep better with that.

I think we are all in the same league, and hopefully on the same team.

Partly what makes me able to do stuff like run like a maniac on a treadmill is the neuropathy....I don't know how bad I pounded myself until days later....some pain perception issues...same with the fingernail.

The diastolic dysfunction is what blew me away....that surprised me. I admit. That should have been discussed with me, so I was at least aware of that.....no need to treat it right now, as the treatment could potentially make my dysautonmia worse....that issue is going to take some real thinking thru....the less pills I pop the better....obviously, pushing fluids is NOT a way to handle my hypotension....I always wondered why I peed it out so fast....now I know. Of course when I mentioned it to docs, no one listened.