Gizzmo
Member
- Joined
- Oct 16, 2022
- Messages
- 27
- Reason
- CALS
- Diagnosis
- 00/0000
- Country
- US
- State
- WI
- City
- Green Bay
I have a few question because this all so new and confusing to me. My hubby is on Riluzole and Relyvrio along with a lot of other meds for Als sysmtons from a few depression and meds to make him hungry . He had a lumbar puncture to see if it would show some answers. The C9ORF72 says negative and the ALS Panel /Frontotemporal Degeneration Planel / Sequencing and Deletion are negative. Which I am glad but does that mean he will not be able to try these new drugs if the FDA approves it on April 25? #NurOwn or #Tofersen .
Also wha type does he have. Seems people say I have this kinda or type. He has weakness in his arms which hardly wants to work but they do at waist high. And his shoulders muscles are pretty much gone. Any answers will help with the stress of not knowing Thanks for the help.
Also wha type does he have. Seems people say I have this kinda or type. He has weakness in his arms which hardly wants to work but they do at waist high. And his shoulders muscles are pretty much gone. Any answers will help with the stress of not knowing Thanks for the help.
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