RE: Classical EDS too?/Bernie

[Guest guest]

Cindy;

In this situation a rambling mind seems pretty normal to me. I found it

so immensely helpful to ramble on this site and receive feedback from

others who have had similar experiences and provide knowledgeable

feedback. Going through this stuff provides so many little strategies

for coping with issues. Even the prelim report will help you get the

ball rolling.

I just kept thinking of you....even first thing this am.

Bernie

Re: Classical EDS too?/Bernie

Yes Bernie I appreciate knowing my enemy. Knowledge is power. Dylan's

future could have been so much worse had these things not been found.

And some of these things can be fixed, or slowed down.

The preliminary report isn't a normal thing I don't think. Dr. Nazli did

that so we could get things started. The report won't come in for 2

months and some of these things need immediate attention. All the test

results aren't finished yet. This was her way of getting the word out

to his Drs. quick. I have already forwarded the email to his pain Dr,

but his primary doesn't have an email, so I'll print it out and take it

when Dylan sees him next week.

He did have a MRA which was normal. The echo showed something that they

have found in every EDSer, that is not seen in " normal " folks. They

think this may be a new DX tool for EDS since it has shown up in every

person tested so far. They did a MRI of the thorasic and lumbar as part

of the protocol. That's when they found the bulging disk. The Dexascan

found the low bone density in the hips. They suggest a MRI of the

cervical here at home. His physical exam showed a problem at C7.

How am I? Well, overwhelmed I guess. I can't get anything done, I can't

sleep, and my mind won't shut off. He is so much worse than I thought.

He's so young for most of these things to show up, I can't imagine what

he'll be like in 20 years. His new heart findings are my first thing to

address, but I'm so worried about C7. One wrong turn or car accident and

they said he could be paralyzed. I'm wondering if he is going to need

fusion to protect the spinal cord. Fusion is some thing that I always

said NEVER to, but I suppose we can't ever say never. And now with them

saying he may have Classical and type 3, I wonder if he'll hold

stitches. See how my mind just keeps rambling?

I'll stop here. I could ramble forever. I guess I need time to get uses

to all this.

Talk to you later.

Cindylouwho