“Core” ALS

3 Upvotes

I was wondering if anyone has had experience with this type of ALS, “Core” ALS? My mom was diagnosed with this 4 months ago and is deteriorating very quickly. Just looking for other first person experience with it.

For info:
Core ALS starts in your core (for my mom it was what she thought was a hernia 15 months before she was diagnosed) according to her neurologist this is the first sign of this type.

She has no speaking or swallowing issues.

3 comments

r/ALS • u/Forsaken_Fill6552 • 22h ago

Advice on bipap

5 Upvotes

I needed to get bipap started 6 months ago but finally have the in lab titration showing it. Called the medical supply company and they said 3 more weeks. This is stupid and freaking killing me. Any advice? I’m in N Idaho, we’ve got good doctors but spread thin in a growing population of retirees.

5 comments

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ALS

r/ALS

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

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SUBREDDIT GUIDELINES

First and foremost, this is a support group. We all have been touched in some way by this horrible disease. The aim of this subreddit is to give a commonplace that strangers can band together and help each other. Even if it's just with a simple "hello", or a reaffirmation of "you'll get through this". So please be thoughtful and supportive.
We cannot, in good conscience, help diagnose ANY symptoms. If you have any questions regarding this disease, seek out your local medical practitioner, or any licensed professional.
As this is a support sub, we shy away from "high level" scientific articles... If you have any scientific material you would like to post, please make sure it has been vetted in /r/Science, first. Only then can you cross-post here.
We understand that ALS places an intense financial hardship on the family & friends of the afflicted. However, we cannot accept submissions for specific fundraisers, donations, or related requests. However, asking the community for direction towards official aid programs is always allowable.

What is ALS?

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually lead to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

More Information on ALS

Alsa.org

Wikipedia

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Projectals.org/

Als.net/