HopeNPrayer

You are currently not working? I do know that people who waited to apply and were diagnosed have received back dating on their benefits. That is, they stopped work, then say 2 months later had an ALS diagnosis apllied under Teri and the 5 month wait started with their stop date. There is also something called intent to file. I don’t know much about it but it might be something to look into.

Hi Nikki,

Thank you for your advice, I appreciate it. Yes, I have asked her about how to approach disability and that I was confused as to which way to go, she said that she would be comfortable stating that I had "probable als" at this time. I keep asking her why not at the least a follow up with her, I see that EMGS are done every 6 months usually?

I have an HMO, so originally she had stated they didn't have a neuromuscular specialist. However, recently discovered there was someone, and I made the apt the following day, however it is not until Jan.

Waiting is miserable, life is on hold, as are many decisions. I haven't heard of TERI. I see it now, thanks for the advice. Should I just apply for disability...with foot drop, gait, muscle atrophy for ie with probable als through the normal, slower process? Tricky, that is what I was concerned about being rejected and then having to reapply for ie.

Hi i believe you mean you were told it is likely ALS or you do have a diagnosis? Confusingly there is a diagnostic category of Probable ALS which has a diagnostic emg in 2 sepparste areas such as arms and legs. If you had that you should have been prescribed or at least offered riluzole and radicava. If you do not have a diagnosis applying under TERI will almost certainly earn you a rejection. I have had several FALS friends who jumped the gun before getting a diagnosis and ended up in appeal with many delays. May I ask why you have such a long wait? Did you not start the second opinion quest in June? Long waits are common but I am shocked it is 6 months. Have you returned to the original neuro to discuss disability and what s/he will document for you?

Hi there,

I was wondering if anyone has applied for disability under the Compassionate Allowance Act with a "probable" ALS diagnosis.
My neurologist has stated a strong probable, I haven't had an EMG since last April. Trying to get into see a specialist...there is a long waiting list as many of you know. I have an apt with one but is not until next January. I can't work...

Any suggestions? Should I try to apply through the Act, or should I just apply normally with the longer waiting period. I hate to be denied and have to reapply down the road. Oh the catch 22s, I can't wait..not sure of the best way to navigate.

Thank you for your time and advice.