Well, that is a harrowing story, John.

I could only recall one other post about LOTS... here:
http://neurotalk.psychcentral.com/sh...ight=tay-sachs

It mentions that it can be confused with myasthenia gravis or MS.

You should find out if you have a hidden B12 deficiency...it can cause progressive neurological failure too. If you were tested and told normal...you might not be. This is because the labs here still report the lows as normal. The new low is 400pg/ml or better. So if you are below that, you need to supplement properly ASAP, before damage is permanent.

This is a sobering video by a nurse and her doctor husband who have written a book about this. In the beginning of a video is
a doctor himself, who fell thru the B12 cracks! That is how common this is:
https://www.youtube.com/watch?v=BvEizypoyO0

This is my B12 informational thread... It is important to take the activated form, and orally will work, if taken on an empty stomach.

I think you should look into this, just in case... look what happened to that doctor in the video!

Yes, LOTS is so rare that it is often misdiagnosed. I lucked out and found a very good neurologist who has been specializing in ALS for over 20 years. In that time, he's only seen two other cases of LOTS. I was his third.

I replied to that other thread with some contact info. I have a WONDERFUL support network for Tay-Sachs!

John,

I just wanted to say...

welcome to the NeuroTalk Support Groups.

Welcome John Pollman.