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If they think you have ALS, you would likely hear “We can’t rule out ALS at this point.” This is what a doctor told my husband at his first EMG. A couple months later, at the second EMG, the neurologist told us that he suspected ALS and sent us to promptly be seen by an ALS specialist for an...

Update - if you’re having trouble with the DME company or given a device that you’re not happy with, remember that you always have the option to purchase your own by paying out of pocket. I reached out to Laurie about the recalled trilogy and she recommended a refurbished ResMed from the Second...

Hi Everyone, I just wanted to make sure that everyone is aware of what happened to my husband. The local DME provided us with a Phillips Trilogy Evo (3/2024) and did not disclose that it is currently part of an active Class 1 recall. I realized this by matching the serial number to the recall...

Premera approved my husband’s prescriptions for Radicava ORS and Relyvrio for either 6 months or a year (I can’t remember right now and I don’t have the letter nearby). He’s stopped the relyvrio due to the trial failure, but is still taking the Radicava. We get it through Accredo. Oh whoops -...

My husband has been on Relyvrio since it hit the market and he’s been in a continual decline (I guess ALS always is, but he was diagnosed 18 months ago and it seems to be relatively fast). We spoke to his neurologist and he said they were disappointed with the results and it’s reasonable to...

Smjacobssmd - thank you for the info! We confirmed with my husband’s neurologist and PCP and they see no harm in trying this out. The only issue is that he can’t swallow any medication and it’s a capsule so I put gloves on and was trying to squeeze the liquid out so I could put it in his...

Good luck Vivienne and please update. My husband has had no plateau this whole time of 18 months since diagnosis (in my opinion). He’s on all 3 R’s and is bulbar. I’m still considering trying to get him the dustaeride to try. I feel like we don’t have anything to lose …

Ugh, it can’t be crushed? If it has to be swallowed whole then it’s crossed off the list right now …

Thank you for sharing this! I am going to reach out to my husband’s neurologist and/or primary care provider and ask for this medication.

I am so sorry to hear of the diagnosis. My husband was diagnosed at age 40 (august 2022) and we’re nearing 18 months after diagnosis. He was initially diagnosed as limb onset, but quickly progressed to bulbar. He might be fast progressing, but at this point his speech is almost totally...