Jerry Manning
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We’ve had little collaboration with our very well known ALS clinic. As a former nurse, I’ve found navigating the system so disheartening. We’ve asked questions, we’ve researched trials and supplements, we’ve asked about them, we’ve even asked for an appt outside of a clinic. Absolutely frustrating.
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Good morning. Mike, would you be willing to share the off label meds your wife is using. We are still hoping for the Healey trial but also want to have alternatives if this doesn’t happen. Currently I am only taking basis and then going to try nuedesta off label to see if it helps swallowing. We try to keep up on the trials and research but it’s difficult. Our neurologist doesn’t really suggest other things to us so this would provide a starting point for discussion. Thanks so much!
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Hi Diana
I too am a Vet and I have found my VA to be an amazing resource for anything I have needed so far. A good advocate can really help expedite the paperwork process for getting approved for benefits. ALS is considered “service connected” so it means 100% disability benefits. I wish I didn’t have use them but I am so grateful the VA steps up to provide benefits. I too wondered if it was something in the immunizations we were given. I doubt we’ll ever know.
God Bless and prayers for both of you.
Jerry (from Kansas)