NeuroTalk Support Groups - adult onset leukodystrophy

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- - adult onset leukodystrophy (https://www.neurotalk.org/general-health-conditions-and-rare-disorders/16087-adult-onset-leukodystrophy.html)

michael178

03-22-2007 08:34 PM

adult onset leukodystrophy

Anybody out there with a leukodystrophy??

Tammy72

03-26-2007 02:39 AM

Michael178, I dont know anything about you situation, but I did pull it up under "MedlinePlus search Help" they had info. on it. Also a clinical stuy going on at the Institute of Health. You may want to look them up. My doctor says their very good, He is wanting to send me there for my problems.I wish you the best and God Blee You,Tammy72

michael178

03-30-2007 11:45 AM

I applied at NIH, and they got back to me, Cannot provide further assistance. But they did confirm Cadasil disease.. or a variant of it. My family and I test negatively for Cadasil. But this is the 3rd such opinion, all from excellent sources so we accept the verdict.

LaMike

11-24-2011 11:13 PM

Me Too

Quote:

Originally Posted by michael178 (Post 82156)

Anybody out there with a leukodystrophy??

I have it and am new to this. Was diagnosed in September after years of strange symptoms and no answers form former doctors.

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