Hello! How have you been doing? Did they find any answers?? I am still doing ivig every 3 weeks and it is keeping me afloat, though my atrophy is slowly getting worse, though very slowly verses when it all started and I got it so suddenly... I never feel normal, though i will have periods...
Hello, I am SO so so sorry to hear of what you and your family are going through.. I hope and pray y'all find some answers with a treatment.. Has he had a lumbar puncture? (look for elevated protein and other causes), has he had MRI's of his head and neck? Does his emg show signs of mnd? Does...
I think about you lots.. how are you?? I have been declining recently.. Afraid I need Bipap at night now.. my right leg isn't working right either.. nor my pinky fingers.. .. no one knows why at this point
I'm so sorry to hear that.. Vertigo? Does that go along with mitochondrial dz? Did they do that muscle biopsy? Gosh, I am sending prayers your way.. think about you often..they still thinking mito?