I know that L-Tyrosine in large daily doses help with strength. Also L-Canatine helps with keeping things moving through the body.
There has been some advances in research. I know they have found things that help with mice and also dogs. The medicine isn't approved yet but could make strength easier to get for the patient!
Doctors had never seen a person with this disease before me. They said it was very rare. Eventually I found others online and we are a like family. The nemaline myopathy support group on Facebook is a great resource community.
ACTA1 ;mild to severe side; NIV/night, Gtube, spinal curvature >70, surgery never done/considered too risky by local surgs
Complicated labor-ischemic hypoxia
autistic, failure to thrive
used to walk 2 to 5 years
declining :(
I was born with the condition Nemaline Myopathy & have always had muscle weakness, but I wasn't diagnosed with it until I was 43. I suffer from Ehlers Danlos Syndrome and in my long trail of searching for help and answers for that condition I ended u...