Shampton0708
New member
- Joined
- Feb 20, 2016
- Messages
- 7
- Reason
- CALS
- Diagnosis
- 10/2015
- Country
- US
- State
- Fl
- City
- Orlando
New CALS member so if I am asking the question in the wrong forum thread please let me know. My wife Cindy was diagnosed in Aug 2015. Having trouble breathing, swallowing and speaking but still mobile with weakness on her left side.
Went to Mayo Clinic Jacksonville and enrolled in a clinical trial (NCT02496767) for Tirasemtiv. She also takes Riluzole. We have been part of the trial since Jan 2016, not seeing much results IMHO. Cindy uses a Trilogy at night and that has helped alot. She went to have the feeding tube procedure done about 2 weeks ago. She has lost 60lbs since August. Hoping this will help her maintain her current weight.
One questions for CALS folks in the forum she is having trouble tolerating the "nutritional" formula (NestleHealthScience - Nutren 1.5). She get nausea, sweats and feels overall crappy for about an hour after doing one. She sits up, tried just a 1/2 a carton, has slowed the drip (using a gravity bag right now) and eats a piece of toast before trying one. She has run an INSURE thru it with no issues. Does she just need to get "used" to these supplements to build up to taking 3 cartons a day. Currently only able to do 1. Open to suggestions from others who are further down this journey
Went to Mayo Clinic Jacksonville and enrolled in a clinical trial (NCT02496767) for Tirasemtiv. She also takes Riluzole. We have been part of the trial since Jan 2016, not seeing much results IMHO. Cindy uses a Trilogy at night and that has helped alot. She went to have the feeding tube procedure done about 2 weeks ago. She has lost 60lbs since August. Hoping this will help her maintain her current weight.
One questions for CALS folks in the forum she is having trouble tolerating the "nutritional" formula (NestleHealthScience - Nutren 1.5). She get nausea, sweats and feels overall crappy for about an hour after doing one. She sits up, tried just a 1/2 a carton, has slowed the drip (using a gravity bag right now) and eats a piece of toast before trying one. She has run an INSURE thru it with no issues. Does she just need to get "used" to these supplements to build up to taking 3 cartons a day. Currently only able to do 1. Open to suggestions from others who are further down this journey