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I am on these shots. I paid $327 for a months supply. Does it work? I’m not sure, but my urine is now a pretty pink. (This is expected)..

And I will quote one of my neurologists, “yes. I have patients, diagnosed with ALS, that have normal NFL labs…”

able to be prescribed the ALS drugs? participate in ALS trials? able to use the ALS resources such as a loaner chair? studied for a cure like ALS? Mechanism is similar. End result is respiratory failure. Same struggles as an ALS patient; adls, etc.

For me, I have palliative care as a part of my team. It has made a world of difference for my comfort, quality of life and what they offer. My palliative care offers acupuncture and other modalities, not just comfort medication.

I am on Paxil. It’s great for my anxiety with little side effects. Sorry that you’re having such a hard time.

It’s a joke. I know my body and the things I deal with each minute. I’ve heard, “I wish they(providers) could do a day in my life…” For me, I agree. No other disease presents itself as ALS does. Every time I saw/see a provider, I feel like I just went 10 rounds boxing. This is true emotionally...

I have overlapping conditions that are on top of the, “normal ALS,” symptoms. I experience “shocks,” on my skin, for example. It is seen as a neuromuscular radiculopathy.

Palliative care and ALS clinic

<religious content removed; please post in Religion forum> There will be sadness, anger, grief before death and so on, but try to make the activities, that you can both still can do, super special. Live every moment like it’s your last and you’ll notice that many stresses will vanish. Also, you...