natybaez
New member
- Joined
- Jun 21, 2021
- Messages
- 7
- Reason
- CALS
- Diagnosis
- 05/2021
- Country
- US
- State
- FL
- City
- MIAMI
Hi!!
My dad was diagnosed with Bulbar ALS 64 years old. This forum kept me busy for hours congratulations on everyone here sorry we all have to join under this circumstances.
We have my dad at the University of Miami ALS center. I am inclined on having him do the genetic test since looks like research is more advanced on familial ALS. does anyone have experience with GENEDX or Invitae testing? or do you recommend any other for the test? I cant seem to find a test for the ATAXIN-2 gene any recommendations? I do understand that given his age its more inclined to be sporadic but one must try. His mother had Alzheimers dont know if this helps.
his disease has advanced incredibly fast so we worry he wont get accepted in any research which we would very much like to have a little hope at least. We have been reading a lot about the Healey platform and Biogen trials.
I have him in riluzole, theracurmin, L-serine, Elysium basis and starting with tudca/Sodium Phenelbutryte today. Edaravone was not started since his progression wont have him quialify for insurance however I did find a European company that sells it for much cheaper called thesocialmedworks wonder if anybody has experience with this? or any opinions on Edaravone?
thank you in advance.
My dad was diagnosed with Bulbar ALS 64 years old. This forum kept me busy for hours congratulations on everyone here sorry we all have to join under this circumstances.
We have my dad at the University of Miami ALS center. I am inclined on having him do the genetic test since looks like research is more advanced on familial ALS. does anyone have experience with GENEDX or Invitae testing? or do you recommend any other for the test? I cant seem to find a test for the ATAXIN-2 gene any recommendations? I do understand that given his age its more inclined to be sporadic but one must try. His mother had Alzheimers dont know if this helps.
his disease has advanced incredibly fast so we worry he wont get accepted in any research which we would very much like to have a little hope at least. We have been reading a lot about the Healey platform and Biogen trials.
I have him in riluzole, theracurmin, L-serine, Elysium basis and starting with tudca/Sodium Phenelbutryte today. Edaravone was not started since his progression wont have him quialify for insurance however I did find a European company that sells it for much cheaper called thesocialmedworks wonder if anybody has experience with this? or any opinions on Edaravone?
thank you in advance.