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Are there any new trials for progressive muscle atrophy?
My son age 41 was diagnosed with progressive muscle atrophy on 11-10-25. he has lost a lot of muscle mass and cant use his arms, shoulders much and has a hard time using his fingers on his left hand. his right hand still works a bit. Hoping to find out if there is anything out that can help bring back the use of all of his limbs. so far he can still eat and swallow and is walking good. he is taking a medication that is supposed to slow the progression but hoping there is something out there that can help him get back the use of his hands, fingers, arms & shoulders. thank you
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@tamkent78 as a parent, this must be so hard. I'm tagging @searcher12060 who also has experience with progressive muscle atrophy.
You can search clinical trials at Mayo Clinic here: https://www.mayo.edu/research/clinical-trials
It might be helpful to contact a research coordinator
Non-cancer clinical studies questions
Phone: 800-664-4542 (toll-free)
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1 ReactionRight now, most available treatments and clinical trials focus on slowing the disease down rather than bringing back muscle that has already been lost, because regrowing those nerve connections is very difficult for the body to do.
You can check the website ClinicalTrials.gov and search for PMA or ALS to see the latest studies, as many trials for ALS also include people with PMA. It is also a good idea to talk to his neurologist about "expanded access" programs, which sometimes allow patients to try experimental drugs that aren't fully on the market yet.
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1 Reaction@colleenyoung
Thanks so much for the information. I greatly appreciate it.
@bridgeback2
Thanks much for the information.
How did you get diagnosis. I'm becoming progressively unable to stand or walk and I've lost 10 lb and most of it it's in my legs it's very hard to lift my legs just happens really quickly since September I'm wondering and my doctors are wondering if I have something neuromuscular. I don't I'm going to a neuromuscular specialist but it wouldn't know how to get tested for this
@serahjane hello he went to a neurologist at the KU medical center in Shawnee Kansas & the doctor did a lot of nerve test & blood work. My son had a team of 5 different people in different fields & that’s he he was diagnosed.
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1 Reaction@tamkent78
Thank you