Originally Posted by nrobey

So what you're saying is both exercise and asprine are bad (contradicting) for cadasil patients? I'm not sure I have it, but am currently fighting with my insurance company in order to be tested for it. I've had multiple strokes in my eyes (not my brain). Lost a lot of vision that I will never get back. I've also had 2 seizures. Have headaches, but not like a typical headache. Numbness in one leg (just the upper portion). And white matter in my brain according to my past MRIs. This all started at age 24 for me. I'm now 44. Have seen a neuroopthamologist at Johns Hopkins and he's the one that wants me tested.

Can I ask where anyone else was tested? And if, by chance, you know the CPT number that was used in order to be tested? That's part of my problem - none of the doctors' offices can help me come up with that number and therefore I cannot get a referral. It's quite frustrating not knowing what's going on, what my problem is (could be cadasil, but even if it's not, I will most likely have more strokes throughout the rest of my life and therefore dimensia to follow).