CADASIL Family Forum (since 2007)
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Betchaman

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Posts: 5
 #1 
After 18 months of waiting for the VA to approve the approvals, I am finally starting the testing today. How long after they send away the test should I expect it to take before I get an answer?

CADASIL is the last test in a long succession of tests that I have had since my first "stroke" 2 1/2 years ago.  So far EVERYTHING has come back normal.  I've had 5 MRI's..all show no sign of stroke. 5 Neurologists...all scratching their heads. Why CADASIL? My sister is two yrs younger than me (46).  She is experiencing the same "strokes" as I am. She has debilitating migraines, I do not.  My mom had the mystery strokes, my aunt, uncle and grandmother as well (all on my mothers side). Lots of dementia related illness (in later life) on my mothers side.

One of the older VA neuro doc's (70's) is extremely old school and calls the CADASIL testing "unnecessary and a waist of time". Has anyone else run across a doc that for one reason or another has been against the testing.

I was told that CADASIL can't be seen on an MRI.  Is that true?

Hoping this testing can shed a light on what has been affecting my family for years...

Thanks!
HCA

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Posts: 17
 #2 
I guess no one replied publicly. But the answers to these questions should be public.
Firstly, it takes 6 to 8 weeks to sequence the DNA, interpret and then send the answers back. To your doctor.
Regarding it being a waste of time. Hmm. For 70 year old doctor maybe. He should quit his job.
As for seeing CADASIL on an MRI, yes, IF you know what you are looking at. Most neurologists and radiologists don't. They have not
been trained in seeing the differences, the identification of this genetic screw-up is too new.


It is important to note that what you are experiencing is not a classic stroke in the definition that neuros have been taught. Those are blockages.
Yours are arteries or veins squeezing, spasming in your brain. Sometimes they break and bleed. The damage caused looks like little holes and reduction of myelin sheathing. Which is why neuros and radiologists confuse it with MS. But it is not MS.

CADASIL is a vascular disease. It takes place ALL over your body, but folks only realize there is something wrong when it finally affects the
brain. End stage. The end stage can last a long time, and if the patient works at it, can include a high quality of life.

Wish you well,
Heather Chepko-Albertson


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Heather Chepko-Albertson
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