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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thread 2/3
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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April Sparkles
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In response to Wall Flower.
Darn. That’s a scary diagnosis without support or further information.

I do have friends with ALS. Medical advances have provided some good insight and helped slow the progression of the disease.

I’m hoping your home receives some support and guidance.

Sending light your way.

Love,
April 💛
01:33 AM - Jan 13, 2024
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K Ray
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In response to Wall Flower.
You might consider Mayo Clinic in Minnesota. They have comprehensive treatment. https://www.mayoclinic.org...
01:24 AM - Jan 13, 2024
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K Ray
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In response to Wall Flower.
If you haven't already, try connecting with this organization. It mentions clinical trials that are available. https://lesturnerals.org/c...
01:21 AM - Jan 13, 2024
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Wall Flower
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In response to K Ray.
Thank you!
07:27 AM - Jan 13, 2024
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Wall Flower
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In response to K Ray.
Omg. Thank you. I had no idea.
07:28 AM - Jan 13, 2024
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K Ray
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In response to Wall Flower.
Here's information about connecting with your local support groups. https://secure2.convio.net...
01:17 AM - Jan 13, 2024
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Wall Flower
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In response to K Ray.
Thank you! ❤️
07:29 AM - Jan 13, 2024
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Buzz Clifton
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In response to Wall Flower.
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.
12:25 AM - Jan 13, 2024
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Chana Jackson
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In response to Wall Flower.
No close experience, just acquaintances, but I’m so sorry you both are facing that. I needed to see a neuro last year. (Mild case of Guillain Barré) and got the same very long wait. I called/emailed all my docs and friends who are doctors and magically got in a few days later. Good luck!
10:02 PM - Jan 12, 2024
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Read aBannedBook
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In response to Wall Flower.
Getting an appointment with some specialists in the US seems to take months. I waited 3 months for a neurologist appointment. I have a test next week, which I got because someone cancelled, normally it would've taken longer. My follow up appointment is in June, though they'll call if needed.
09:57 PM - Jan 12, 2024
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ecsbrooklyn
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In response to Wall Flower.
I have no ALS experience, but I do know that this organization has a lot of information. It may be useful, though you may be looking for more specific info.

I'm very sorry about your spouse's diagnosis. ALS is hard. I hope you get the answers you're looking for and the resources you need.
09:39 PM - Jan 12, 2024
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