Diagnosed Dec 4.2023

[Nikki J]

Definitely ask but I think it might and thus disqualify you from early medicare. I know that people can occasionally rescind the early medicare decision and pay back the benefits the people I have heard doing this did it because they went back to work so not sure if you can pay back and then do ssdi. It would be a higher rate then. Definitely find a person who knows the rules and ask lots of questions

 

[Nikki J]

It looks like maybe you can switch. Sending you a link via pm

 

[monique92760]

I was worried about that as well but found out, with the diagnosis of ALS, you can apply for disability SS which, for me, meant I receive the full amount I would receive at age 70 though I've only just turned 63.

 

[Nikki J]

I believe it was what you would get at full retirement age not 70 Are you 100% sure ? It has been a while for me

 

[lisa g]

When I applied SS disability after my diagnosis I was given the full amount as if I was retiring at 70 and at that time I was 60.

 

[Nikki J]

Maybe it changed or I just misremembered.

 

[Paulbx]

when I was finally diagnosed with bulbar-onset ALS, it was after 9 months of searching and multiple EMG tests. The final ‘linch-pin’ to the diagnosis was a ‘deep muscle’ EMG test via my neck up into my tongue. My other muscles (arms, legs, back) all were not showing any signs of abnormality at the time. That was August 2023. I’ve not had another EMG since then. the other test I had was a breathing strength test performed with my pulmonologist. I had that in July 2023 and then again in January 2024. From July to January, there was a 15% decline in breath strength. this test observes both the strength of diaphragm and lungs as well as observes the performance of windflow across the tongue. That combined with lung exam showed that indeed it is my muscles which have been degraded (motor nuerons) which point distinctlly to bulbar-onset ALS. I wished it could be something treatable. However, this is my fate.