Wall Flower
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Anyone here with #ALS experience?

My spouse was diagnosed on Wednesday. Neuro advocated for a second opinion, so I made an appointment when I got home. It’s 5 weeks away!
In the meantime, no meds. No therapy. No support. No information. Zip. Zero. We are beside ourselves not knowing anything.
12:54 PM - Jan 12, 2024
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Wall Flower
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Is this normal (United States - Chicago area)?

I have no idea what to do. No idea what her life expectancy is. No idea what’s acceptable or unacceptable.
12:54 PM - Jan 12, 2024
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Wall Flower
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Doctor said she caught it quickly, but we’ve been seeing signs for some time and have gone to several doctors for issues with weakness, swallowing, etc.
help! 🙏🏼
12:54 PM - Jan 12, 2024
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Buzz Clifton
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I just sent you a private message. Hopefully it went through. My wife has SMA which shares a lot in common with ALS. We've been doing this for 40 yrs so we've seen it all and done it all. Modern medicine will get you through each crisis but mostly useless in between. You can find better help online.
In response to Wall Flower.
12:25 AM - Jan 13, 2024
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