Today's appointment went as expected. I have Ehlers-Danlos Syndrome, most likely the hypermobility type. This is unusual since my sister presented with so many of the symptoms of the vascular type. Consequently, I also approved the tests to check my collagen. There is no test (yet) that is associated with the hypermobility type, but some are available for the others. Hopefully my insurance company decides to cover this, which is likely since it is being used as a diagnostic test. If insurance does not pick up the bill I am looking at $2,000 to $3,000 in medical costs. A risk we are willing to take.
I also am being scheduled for follow-up appointments. One for an echocardiogram to see if there are problems with the valves in my heart. One with a physical therapist to start me with exercise routines that will strengthen and support my deteriorating joints. And, of course, a follow up to look at the results of the tests and echocardiogram.
And on to the next level . . .
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2 comments:
OK, so you know it's real now (we always knew you weren't really crazy ;).
From my previous experiences, the physical therapy will help almost more than anything else. The discomfort you mentioned in your Fall post will not disappear, but will lessen.
You'll LOVE having an echo... so much fun (not).
MC
Even more so, it is good to know that some of the "strange" and "weird" things that have been brushed aside as odd have a reason and can be addressed. There isn't a cure, but at least there is support.
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