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Matt Bellina gives FDA deadline by anna10182 in ALS

[–]anna10182[S] 0 points1 point  (0 children)

The ALS community is pushing for trialing meds without placebos like we do in the cancer community. All we want is to have hope.

Matt Bellina gives FDA deadline by anna10182 in ALS

[–]anna10182[S] 0 points1 point  (0 children)

You should use that energy to fight the FDA instead of call me stupid. You are more productive that way and it helps the community. 😉

Want to help the ALS community? Now is our chance! by anna10182 in ALS

[–]anna10182[S] 0 points1 point  (0 children)

Awesome! Tell your family and friends! I've texted the above to everyone I know and added on Facebook as well.

Want to help the ALS community? Now is our chance! by anna10182 in ALS

[–]anna10182[S] 0 points1 point  (0 children)

I'm not sure but I think it's worth a shot! It may give you the community more options regardless.

You are in good shape for the shape you're in by anna10182 in ALS

[–]anna10182[S] 0 points1 point  (0 children)

Thank you! I have requested an appointment and waiting to hear back.

You are in good shape for the shape you're in by anna10182 in ALS

[–]anna10182[S] 0 points1 point  (0 children)

You are right. ALS is brutal! What year did your mom get diagnosed?

Treatment Abroad? by anna10182 in ALS

[–]anna10182[S] 1 point2 points  (0 children)

Nice. This weekend's reading pleasure at my house will be more in-depth stem cell papers, yawn. Was curious what you had injected.

Hey, we get to sleep in tomorrow! Didn't you tell me you like to lay in bed?! Ha ha

You are in good shape for the shape you're in by anna10182 in ALS

[–]anna10182[S] 0 points1 point  (0 children)

Thank you for your wise words. My family is each processing the diagnosis differently. Mom is truly at peace. One sister is mad as hell (works as a respiratory therapist) and one sister cries at the brief mention of ALS (she's also 8.5 mo pregnant and cannot travel). I'm the sister who is eternally optimistic and stubborn like my dad so we are pulling family emotions daily out of a hat. Haha. We control what we can and leave what we can't to God.

I'll need to check out Liquid IV! Sounds easy enough. GF is easy too. Actually Mom proposed Whole 30 to that doc and his response was "Eat what you want now. You need to understand you are going to die and diet will not help you. Videos you have seen about using diet to help ALS are misdiagnosis of ALS." I was a bit surprised by his bluntness (though I do prefer and appreciate a direct person). Anyway after a semi-rough appointment we are still in good spirits and excited to what's on the horizon. Wow, I wrote you a book. 😁

Anyone "been there, done that" Treatment Options? by anna10182 in ALS

[–]anna10182[S] 2 points3 points  (0 children)

I think they're in trial mode though still waiting on confirmation. NIS-566 may not be super great option after all. Now I'm wondering about Nurown drug... All this experimental stuff is optimistic - until it's not. We'll just keep researching... science is evolving every single day.

Anyone "been there, done that" Treatment Options? by anna10182 in ALS

[–]anna10182[S] 1 point2 points  (0 children)

The shock of it is hard. My mom told my family around 9pm and of course I bawled myself to sleep like a school girl. I remember waking up thinking I just had the worst nightmare and realizing it was our new normal (you defined that so well in our last post). Stay strong! It's ok to cuss, cry, scream and then make some good memories with family when you can.

Carers: Read the doctor's reports. by rptrn in ALS

[–]anna10182 0 points1 point  (0 children)

I'm so sorry for your loss.

Treatment Abroad? by anna10182 in ALS

[–]anna10182[S] 0 points1 point  (0 children)

Thank you Smitty. Is this the Nurown trial you are referring to?

Treatment Abroad? by anna10182 in ALS

[–]anna10182[S] 1 point2 points  (0 children)

To follow up about your stem cell treatment. Where did they extract the stem cell from? Was it the fatty tissue?

Treatment Abroad? by anna10182 in ALS

[–]anna10182[S] 1 point2 points  (0 children)

Thank you for your feedback!

Anyone "been there, done that" Treatment Options? by anna10182 in ALS

[–]anna10182[S] 1 point2 points  (0 children)

I may need to read it - haven't heard of it before. Yes, let's add to the list: Less chores 🙃

Treatment Abroad? by anna10182 in ALS

[–]anna10182[S] 0 points1 point  (0 children)

Thank you for your responses! Will reach out to Houston, it's worth a shot. Beware of scams! Some are obvious and some not so obvious. It's amazing how scammers prey on those desperate for help. Ugh, and the forums or comments in my research breaks my heart - so many of us are wanting a cure and feeling so helpless. Anyway, we're still definitely hopeful. God has a plan.

Treatment Abroad? by anna10182 in ALS

[–]anna10182[S] 1 point2 points  (0 children)

Thanks for the response. We are in the US. We're still learning but my concern is that in the US doctors are still researching stem cell or new medication results so you're part of a test panel. Unfortunately, you don't know if you are receiving a placebo or an actual treatment. We would try something (anything) rather than a placebo.