New member with Late Onset Tay-Sachs disease
 

Hi all!

I just joined and posted in the introduction forum. But was diagnosed with Late Onset Tay-Sachs disease a little over three years ago.

Are there any other LOTS patients here? It's possible, but I doubt it. I'm one of only about a hundred confirmed cases in the entire United States.

John, I answered you on your other thread.

Welcome to NeuroTalk.;)

Thank you for having me! :)

LOTS Support
 

Hi John,
Well, your first GP certainly did a number on you! When I read your posts I had to go have a quick recce as to what LOTS is. As you say yourself, it's very rare.
What isn't so rare are the symptoms matching those of fellow Forum members, so there will always be a sympathetic shoulder of someone going through something similar.
I read that LOTS progression can be slowed by certain drugs - although side effects look rough. I trust your current Doctor has you on suitable treatment.
Any time you want to chat…
Dave.

Hi Dave!

I live about 20 miles north of Detroit, Michigan. But I am currently enrolled in two LOTS studies. One is at University of Minnesota in Minneapolis (about 750 miles away), and another one at the National Institute of Health in Bethesda, Maryland.

I've been to Minneapolis twice already, and I'm headed back there in early March. I'm making my first visit to NIH in mid April.

There is no cure for Tay-Sachs, but they are trying some drugs to hopefully slow the progression of the disease. All I can say is thank God for health insurance. I'm on several different medications. One of them I take three times a day, and it costs $304 per pill! The grand total of my medication cost over $29,000.00 per month!!!

What's a Dollar Worth?
 

Hey John,
Your distances never cease to amaze me, 750 miles is almost the length of our Country! 30 miles destroys me. To think we once Ruled the World.
As for costs, you are worth far more than the arbitrary Dollar value put on your drugs by some Multi-National Pharmaceutical, at least we have the much-maligned but truly wonderful NHS over here. I certainly wouldn't be here without it!
Good luck with all your travels and treatments.
Dave.