Re: Cindy\EDS Marker

[Guest guest]

Your very welcome Bernie. I hope her test goes well. I've never heard of

midodrine.

But I'm glad it's working for her. So a new Dr huh? sometimes I don't know

if they like it or not when we know so much. I think I've intimated a few Drs by

information I have given them. LOL

Cindylouwho

Cindy\EDS Marker

Cindy:

Thank you a thousand times for your clarity re echo difference in EDS.

Meaghan is having an echo on Aug. 31, and cardiologist visit to look for

changes in Aorta and rule out Marfan's Syndrome. I will explain this

possible new marker and ask him to look for it. This visit should prove

even more interesting than I expected, plus I do so hope that there is

no dilatation of the Aortic Arch and or excessive increase in diameter

of Aorta. This diameter was not specified in her first echo approx. 2

yrs ago so it may not be clear. Also, since Meaghan is on Midodrine, a

vasoconstrictor, it will be interesting to see if there are changes of

any sort.

Also of great interest to Meaghan and myself is the fact that without

midodrine her numbness in baby finger, ring finger and 3rd finger is

very noticeable to her, however when Midodrine is working this numbness

goes away entirely and full sensation is restored.

Since Midodrine works on the blood vessels and not nerves this has to be

an effect of circulation and yet it would seem to affect the

nerve..unless it is the effect of blood supply to possibly nerves in

cervical area or hand? Interesting huh!

I will quiz the cardiologist, a new guy to us. Hope he is prepared for

us! ! !

Bernie