Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
My name is Eddie. I was diagnosed in 2008 with MG due to multiple positive blood tests for the ACHR. It took almost 2 years to get a diagnoses. I was having weird facial tingling, slurred speech at times, and what I thought, was my tounge feeling heavy/numb. I also had problems with my throat. It took my current Neuro, the only one to test me for EVERYTHING including MS, to realize I had MG. I have been blessed for almost 5 years and I have never taken meds. I have good days and other days are ok. I mainly have issues with the bulbar muscles, I only have mild eye lid weakness, and fatigue. For the most part I have been putting along. What changed was in April was my vision became wavy. When I look at patterns or even when I read the lines and letters very slowly wave about. It's not normal and not consistent with MG. I've tried covering one eye and both eyes do this. My doctor immediately had me come in and ordered tons of blood work for EVERYTHING, MRA, MRI with and without contrast of the brain, eyes, and C Spine. According to him, everything looked good. I even had Evoked Potentials and the eyes and ears came back fine. The SSEP said the right foot was slower than the left but he isn't concerned with it. I saw three eye doctors, an Optician, Neuro Opthamologist, and a Retina Specialist. The only thing that was found was eye lid weakness (no optic neuritis). I had a lumbar puncture and waiting on the results. I'm pretty scared guys and just want someone to talk to.
Sorry to hear about the vision problems added on to MG. Sounds like your doctors are doing the right thing in checking everything out. Out of curiosity, is the distorted vision occasional or all the time?
There are some "do-it-yourself" diagnoses questions at
http://www.mayoclinic.com/health/symptom-checker/DS00671/SYMPTOM=2AA5FA41-2A5D-9994-E541988FCC51F756&TAB=Vision%2520problems
Good Luck
Focus is not mentioned as an MG symptom, but part of the muscle that controls it is striated. Add a little double vision and what you see is quite possible. What time of the day did you see the neuroophthalmologist? I would think they would pick up on the eye muscle weakness if not the focus problem, but if it were early in the morning and they didn't wear you out, it might not have been present.
Eye problems do not always respond to Mestinon, especially at low doses. Let us know how you are getting along. b.
I don't have any answers for you, but I do know how you feel right now. Hang in there, and try to be patient. Some of us have had to wait many years for a dx [mine was 4]. For me, the waiting is the worst part, and I do understand what you are going through. God bless, and I hope you do well.