How long did it take from when you fi... - Leukodystrophy Su...
Leukodystrophy Support
195 posts•
How long did it take from when you first saw your primary doctor about you or your son's condition to when you saw a specialist?
••24 Voters
10
Less than 12 weeks
7
2+ years
5
3 months - 6 months
2
6 months - 1 year
0
1 - 2 years
4 Replies
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In 2004!
I ignored the symptoms, hoping they would go away.
I knew something was wrong when my son was having a lot of behavior issues. I set up an appointment to see his primary doctor. She told me there were more going on then just behavior issues. And he needed to see a specialist. 2 weeks later I met with him and the testing begin. I took another year before finding out he had ald.
We actually found out unexpectedly. My grandson had a seizure on the school bus on his way home from school. So didn't find out through his primary care doctor. This was in February. We still have not seen a specialist yet. We have seen a geneticist a few weeks ago.