Cherise77
Active member
- Joined
- Jun 18, 2018
- Messages
- 72
- Reason
- Loved one DX
- Diagnosis
- 07/2018
- Country
- CA
- State
- BC
- City
- Vancouver
Hi all! We’ve only been to our ALS clinic once to meet neurologist and clinic nurse which was two weeks ago.
During the visit we inquired about a couple trials my Dad may be interested in as well as treatments Riluzole and Edaravone. The Neurologist and Nurse said they could give us no advise or guidance with trials and tried to talk my Dad out of taking either Riluzole or Edaravone. Said there was little evidence that either had much impact on slowing progression.
After leaving clinic we had some follow up questions which we sent to the nurse regarding vitamins that he’s taking and she passed on email to dietician who said there is no proven benefit to any foods, vitamins or supplements taken with ALS. She recommends not taking anything.
My mom is crying and devastated that they’ve given us nothing at all to try and have said to just do nothing, no treatment, trials or vitamins.
I’m confused as to if this is everyone’s experience at their ALS clinic and if it is why can’t they recommend anything for the patient other than just waiting for symptoms to progress? I understand it’s a terminal illness with no known cure but what’s the problem giving a patient a little bit of hope and positivity? Taking vitamins and eating heathy and having hope should be something that’s promoted with any illness. What is the harm to the patient?
Thank you for your advice and letting me vent.
During the visit we inquired about a couple trials my Dad may be interested in as well as treatments Riluzole and Edaravone. The Neurologist and Nurse said they could give us no advise or guidance with trials and tried to talk my Dad out of taking either Riluzole or Edaravone. Said there was little evidence that either had much impact on slowing progression.
After leaving clinic we had some follow up questions which we sent to the nurse regarding vitamins that he’s taking and she passed on email to dietician who said there is no proven benefit to any foods, vitamins or supplements taken with ALS. She recommends not taking anything.
My mom is crying and devastated that they’ve given us nothing at all to try and have said to just do nothing, no treatment, trials or vitamins.
I’m confused as to if this is everyone’s experience at their ALS clinic and if it is why can’t they recommend anything for the patient other than just waiting for symptoms to progress? I understand it’s a terminal illness with no known cure but what’s the problem giving a patient a little bit of hope and positivity? Taking vitamins and eating heathy and having hope should be something that’s promoted with any illness. What is the harm to the patient?
Thank you for your advice and letting me vent.