Sarah100

Close Myasthenia Gravis

My 14 yr old daughter was diagnosed 6 mos. ago. She was a power volleyball player and was having trouble setting the ball. When she started slurring her speech in the evenings we saw a neurologist and she was diagnosed with acute, generalized MG right away. She went on Mestinon but rapidly worsened so she had IVIg and thymus gland removal 3 months ago. They helped somewhat but she is still very fatigued and has muscle weakness. She just started birth control .

Treatments

IVIG Working / Worked

Had severe headache when treatment was "pushed" in 3 hrs. Did ok with 4 hr. treatment.

Mestinon Working / Worked

Not sure she's getting enough or too much.

Thymectomy Working / Worked

We'll see. Can't recommend Dr. Diana Farmer at UCSF highly enough. My daughter has 3 small scars in side from scopes. That's it.

Close Glaucoma

My 15 yr old daughter has just been diagnosed with glaucoma and already has "loss of visual field" in her left eye. She was also diagnosed with generalized myasthenia gravis when she was 13.