I agree with you Amanda UA Miami is outstanding. I have been in a study of Dr Benatar for the last 4 years. Although now at clinic I don’t see him.I was seen by Dr Granit for a long time. He was always so kind.

I now have Dr Brown and his team. I can text him anytime and get a reply fast. I have to say honesty is what I want no sugar coating…

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I have to say that speech and excess saliva are what mostly puts me over the edge. In the 5 years of being diagnosed and 8 years being symptomatic I have to say l that those 2 things have been the hardest to accept.

Yes, the failure of the Phoenix trial was a blow. For months AMX0035 (Relyvrio) was touted as a miracle drug that us PALS were waiting for. It was rushed through approval from the FDA without a phase 3 trial.

I had been taking it prior to it being approved getting it from a compounding pharmacy then switching over to CVS Caremark once it…

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can deal with the weakness in the limbs. I am grateful that after 5 years of being diagnosed 8 years symptomatic that I am still somewhat independent. Yes there are things that are becoming harder and exhaust me but that comes with the territory. If I can still put in earrings (even if it takes a ½ hour) I take it as a win for the day.

For…

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My word is “maintain “. Focus on all that I can still do, maintaining a positive attitude (which we all know is hard at times).

I have been taking Riluzole since 2019, Radicava by IV since 2020 switched over to the oral form when it came available and have taken Relyvrio for over a year. Have they helped its hard to say since there isn’t a specific pattern of progression. I will say that I think in my case they’ve done something. I can still walk with a rollator and…

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