Originally Posted by torahpsych
My son has LOTS (Late-Onset Tay Sachs), without the psychiatric presentation that some other patients have. the presentations vary widely, so don't assume you don't have it just because you are missing some possible symptoms. Eye involvement is usually not a symptom (in one study, all vision and eye related issues were normal except for barely measurable differences in saccades), but almost all patients have issues with balance and gait.
best of luck
Thank you for taking the trouble to reply. We wish your son the best. When I first came across LOTS, I wondered why it took me so long to find it, since I spent so long trying to find a disease that matched my symptoms. But the reason is that LOTS is so very rare--I think I read that there are only 200 people in the U.S. diagnosed with it, though I understand that there are probably many people who have it who are misdiagnosed as having ALS and other diseases.
I have seven siblings (I'm the second oldest, and I'm 45), so if it's in the family, I expect it will show itself soon enough, though my mother had many miscarriages.