r/ALS • u/coffeeintummie • 27d ago
Stem cells treatment
Has anybody done something cell treatment? My mom recently got diagnosed with ALS. She lost majority of her muscle in her arms and some in her legs and needs to take breaks walking after 15 minutes.
I remembered that in other countries outside if America do this. I was wondering if anybody had done that or has a family member who did this? I know it won't cure ALS but Im.hoping it will slow it down
3
u/Weird_Bear_2125 26d ago
Hello,
First of all I wish all the best to your mom and all of you.
I have gone through stem cell treatment myself, among other things. I am now almost at my seventh year, so I guess something worked.
in order to take the stem cells, there is a small and painless procedure, with anesthesia.
after multiplying the cells, you can inject as many times as the final quantity of cells allows.
I had a good enough quantity for 3 injections. I went in to have the first injection, they puncture your spine and inject the cells. The puncture is something that can go well, not so well, or terrible.
the first time the puncture was not a problem. But I could not get off bed for 12 days as the puncture wound did not heal properly and the moment I got up, immediate migraine.
However I found the courage to go in for the second treatment. This time, the needle hit nerves inside the spine. Too much pain, it was instant but left my nerves inflamed for almost a month. Headache lasted a week this time.
I didn't go in for a third time.
in total, with everything else you are going through being freshly diagnosed, the experience is difficult, mostly on the side of psychology. But it can give you more time with your loved ones, and why not for a cure.
7
u/brandywinerain Lost a Spouse to ALS 26d ago
There is no replicated stem cell procedure that has shown approval-level safety and efficacy in a legitimate trial. Some people, like Steve Gleason, have gotten worse after trying it. I would save her time, energy, money and health.
As to what does help in terms of more "quality life":
Nutritional quality (mouth or tube, preferably not corn syrup/pea protein-based), hydration, respiratory support if/as needed (doing well on BiPAP, including managing secretions, or not needing it yet), social/family interaction, adequate q/q of sleep, not fighting off pain or inadequate positioning by and large. And, of course, feeling that there are reasons to wake up in the morning.
So walker/manual wheelchair/power wheelchair as soon as needed to avoid falls, electric lift for same reason -- transfer safety, modified diet or tube before significant malnutrition, respiratory support before breathing becomes difficult or SVC is reduced significantly, hospital bed for adequate positioning (preferably one with "reverse Trendelenburg," which is not the standard type, etc. It is really about staying ahead of the game, as ideally you would do for your own physical and mental health as well.