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Is there a doctor in the house?

by EdH / July 21, 2006 12:23 AM PDT

Trying to find out something about Cadisl. I got a call from my neurologist's Nurse/Practitioner yesterday as I was about to drift off for a nap. He speaks Doctorese rather than English, so I didn't really understand a lot of what he was saying. I am supposed to get a blood test done to rule it out. I can't find very much about it on the internet so far.

They are going to send me a written report, but until then I would like to know more.

Apparently it is related to migraines and auras, neither of which I have. Is it part of MS or not MS? He just said there was a ''spectrum of demyelinating conditions'' and they thought it was a possibility based on what they saw in my MRI results.

So am I going to die or be cured? I know; we're all going to die. The only answer was that it's very rare and they expect the blood results to be negative.

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Ah! Possibly the wrong spelling...
by EdH / July 21, 2006 12:29 AM PDT

CADASIL? I wrote CADISL as it was dictated to me.

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Sounds bad. I hope the test is negative...
by EdH / July 21, 2006 12:33 AM PDT

I prefer MS. I can deal with that.

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Ouch !!
by duckman / July 21, 2006 12:36 AM PDT

I googeled the second spelling and that isn't too good. Maybe just a false positive ?!?!?! Good luck

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Thanks...
by EdH / July 21, 2006 12:42 AM PDT
In reply to: Ouch !!

I haven't had the test yet. Just a hunch on their part. They said they expected it to come up negative, sooo....

But my dad died of just those kinds of strokes, though later in life, and it IS genetic.

No point in worrying about it now.

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You got to think.....
by Rolway / July 21, 2006 12:47 AM PDT

Positive ED to get negative results. I sure hope your tests come back negative. Maybe you spelled it wrong again.

George

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Time will tell...
by EdH / July 21, 2006 1:05 AM PDT
In reply to: You got to think.....

You know, the more I learn about it the less it seems to me, (not a Doctor of course) to be what I have. The symptoms don't match mine at all. My symptoms are the classic symptoms of MS. So that will be my positive thought.

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I forgot,
by duckman / July 21, 2006 1:07 AM PDT
In reply to: Time will tell...

when did your MS start?

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Hard to say...
by EdH / July 21, 2006 1:14 AM PDT
In reply to: I forgot,

it sort of creeps up on you. The first indication was about eleven or twelve years ago, but I was "officially" diagnosed about five years ago (not consulting records; it could be six or more).

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Hope everything will come out OK
by hh / July 21, 2006 1:22 AM PDT
In reply to: Hard to say...

I don't know what else to say other than think positive and hope for the best.

p.s. I will consult with some of my doctor friends to get more information.

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Thanks. Not as worried as I was an hour ago...
by EdH / July 21, 2006 1:29 AM PDT

The initial freakout is the worst. I'm expecting the best now.

Isn't life interesting?

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Life is full of surprises
by hh / July 21, 2006 1:32 AM PDT

but we can do without those related to (bad)health!

On another note, I got this from a website: ''A Scottish study suggested the prevalence of CADASIL in that population was about 2 in every 100,000 adults. Worldwide, approximately 400 families have been described with this disorder.''

The odds are in your favor.

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That's what I thought last week when my wife was
by duckman / July 21, 2006 3:50 AM PDT

LATE

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Were you happy or sad?
by EdH / July 21, 2006 4:19 AM PDT

Or can't you say?

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(NT) (NT) I only want 1 child
by duckman / July 21, 2006 5:10 AM PDT
In reply to: Were you happy or sad?
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Are they uncertain of your diagnosis?
by Kiddpeat / July 21, 2006 1:55 AM PDT

I remember when my daughter's liver condition was not yet pinned down. They would rule out one nasty possibility only to come up with something worse. The final diagnosis found a structural abnormality which, so far, means drinking some cholesterol reducing medication several times a day.

I hope for the best outcome in your case.

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I thought they were certain....
by EdH / July 21, 2006 4:14 AM PDT

but MS is tricky because it presents in so many different, ways. It's not really well-defined as a disease.

There is SO much that medical science just does not know.

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It's a new one on me ...
by Bill Osler / July 21, 2006 10:09 AM PDT

From what I've read I doubt it is closely related to MS but I can't be sure.
I hope you get some sort of good news out of this.

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Thanks. I'm staring to think this a CYA action...
by EdH / July 21, 2006 10:14 AM PDT

like, "just in case."

Not too worried.

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