Nikki J
Moderator
- Joined
- Mar 22, 2012
- Messages
- 16,378
- Reason
- PALS
- Diagnosis
- 04/2014
- Country
- US
- State
- MA
- City
- Boston
I am sorry about the posting limit. It is somewhat new and apparently can’t be adjusted but it does pass
look here Resource - Second opinions and first clinic visits for some second opinion tips. The rest of that resource section take in little bites as it can get overwhelming.
what they will do for testing will depend on your presentation and on the doctor. My clinic ( Mass General) often want their own emgs but waive that sometimes in they know the original emg examiner. Whether there are other tests that need to be done for a full rule out of mimics of course we don’t know
ask about voice banking st clinic. MGH refers us to Children’s ( weird I know) where they have a program for all things ALS communication and help with direction and give or loan equipment. We have lots of threads on it if you search as well.
certainly some people have continued to work for a time. What, who and when to tell varies tremendously. Do consider the energy cost and the trade off of benefits from work with time with family. Once you stop if you have enough recent social security credit you will be eligible for ssdi and medicare. There used to be a 5 month wait but that was eliminated
look here Resource - Second opinions and first clinic visits for some second opinion tips. The rest of that resource section take in little bites as it can get overwhelming.
what they will do for testing will depend on your presentation and on the doctor. My clinic ( Mass General) often want their own emgs but waive that sometimes in they know the original emg examiner. Whether there are other tests that need to be done for a full rule out of mimics of course we don’t know
ask about voice banking st clinic. MGH refers us to Children’s ( weird I know) where they have a program for all things ALS communication and help with direction and give or loan equipment. We have lots of threads on it if you search as well.
certainly some people have continued to work for a time. What, who and when to tell varies tremendously. Do consider the energy cost and the trade off of benefits from work with time with family. Once you stop if you have enough recent social security credit you will be eligible for ssdi and medicare. There used to be a 5 month wait but that was eliminated