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I'm Going To Nih For Eds Study


Maxine
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I'm finally going to NIH for a two day study, and to see Dr. Nazli McDonnell who is running the study.

http://www.grc.nia.nih.gov/studies/ctd.htm

I'm in the "longitudinal arm" of the study, meaning the longer one that is two days.

As you can see there are more tests, but I can deal with that, and the physical exam should be interesting.

I'll be going April 3rd, and 4th, which means we need to leave on the 2nd. We'll be driving, and it will take about 9 hours.

Actually, I have known for several months that I was accepted, and have also known the date, but I wanted to wait until I talked with the coordinator today to confirm.

Now that I know so many of my physical problems are attributed to my EDS, I'll be looking forward to this study, and looking forward helping with the research.

Maxine :0)

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Maxine, do you still have the loop recorder in? I don't think you can have an MRI with that can you? You should verify that before making such a long trip.

Maybe you had it taken out and I missed that, if that's the case, oops, sorry....

I'm assuming you won't get any results or anything, as it's a research thing? Or will they let you know the results? It would be nice to have answers to some things wouldn't it? Good luck sweetie! morgan

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Morgan---thanks for replying and your support-- :rolleyes:

I've had at least 3 MRIs so far, and one MRA. The only thing they have to do is download the loop recorder before the MRI because it scrambles everything up, and it makes it look like your heart really acted up. Then they reset if after the MRI.

Right now the battery to the loop recorder is dead, so it doesn't work anymore. Dr. Grubb will remove it, but he said I could take my time, as I'm overwhelmed with so many other things going on, and knows I'll need to be put out for it. We may put another one in, as I didn't have the episode that needs to be recorded. The only things found were single PVCs and PACs----maybe a couple doubles, and of course tachycardia. One bad episode was recorded over, and I was so mad it wasn't caught. I pressed the putton, but I was shaking so bad, I don't think it worked.

The loop recorder isn't attached to anything, and it's titanium, just like my titanium plate in my neck. I have had MRIs with that too. It is weird, as sometimes some people can feel some heat from it----but I really haven't noticed.

I will certainly let them know that it's there. MRIs of my chest, abdomin, spine, and brain will be taken----among many other tests.

Maxine :0)

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Good luck, Maxine!

I don't have EDS (as far as I know), but I think it's cool that you're participating in a study. Hopefully, you find out some useful information, both for yourself and the medical community in general. Thanks for playing guinea pig!

Hats off to you!

Amy

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It looks like Dr. McDonnel is already finding out a lot of interesting information already that can help some of us down the road.

I commend her for putting so much of her life's energy into this study. I never realized how seriously EDS affects people, their families, or how disabling this can be.

Maxine :0)

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