I'm seeing the neuro-opthamologist team at Bascom and Palmer in Palm Beach in a couple of weeks. They're the #1 Eye Institute in the U.S. (Maybe the world not sure). They have testing that can record eye movements that are too subtle for an actual eye exam. I am going to present my case and request the tasting. BTW, the test involves placing a contact that has an electrode on it and they use magnetic imaging to record the movements of the eye. This will pick up ANY kind of muscle weakness or movement disorder. This is my last shot with this I think.

Please let us know what you find out... Hoping you get some very good answers!!!

I admire your tenacity and look forward to hearing what you find out in Florida. The Eye Institute sounds phenomenal and once you explain family history and symptomsI am sure you are going to have your problem better defined.

If is unfortunate that the path to answers is not an easy one but you are doing everything you can to understand and deal with this and that is a testimate to your inner strength. Most of us here have had to wade through a sea of let's call it less then helpful doctor's before finding ones that are truly helpful. It is when people find and post about the ones that do help that we all benefit.

I am hopeful this trip will clarify the eye problem so you can get the best result from therapy. Often times there is more then one thing going on and that makes the clarification all the more important.
Snowflakes can be intricate!

I feel hopeful about this next visit....Keep us posted. Marie

This is long so I apologize if it bothers anyone's eyes but I am brining a documentation with the information below:

Patient Impression/Symptoms:

-Issue with Ocular Motor System/Eye Movement Disorder/Possible Vestibular Disorder

-Symptoms are similar to oscillopsia/nystagmus, however occurs when stationary or moving. The symptoms are constant and intensify as the day progresses (not stop since April). Its a sweep motion down left (slant) back to an up right (slant). More prominent with patterns, print, but always occurs. Ive tried to time it to measure intervals and it fluctuates.

-Symptoms have been disabling as of April where work is a struggle and I had to put college on hold. Im worried that if this intensifies I will not be able to drive or work.

-Visual symptoms make my balance feel off.

History/Exams:

-Previous Neuro- Ophthalmologist exams have been normal. Testing has included visual field testing, OCT scans, pin hole exams, dilated exam, retinal exam (Angiogram).

-Eye acuity has fluctuated from 20 to 25 in either eye. Noted as having irregular astigmatism in right eye.

-Mayo Clinic neurologist feels I have a refractive error in each eye due to blurring. This is not a major concern to me at the moment, the unsteady/moving vision is the disabling symptom. Neuro-Ophthalmologist at Mittleman Eye Center and Mayo Clinic do not think MG, but have no idea what the problem is and could not offer guidance as who to see.

-Neuro-otologists (West Palm and University of Florida) have evaluated balance or ear issues due to a VNG test stating I may have BPPV. Doctors do not agree and feel that this is a brain problem, not an inner ear problem. Hearing tests have been normal (compared to a test in 08) and a CT scan has been performed of the temporal bone to investigate possible semicircular canal dehiscence.

-Neurologists do not feel this is a brain problem. Evoked potentials for limb, eyes, and ears are normal. Spinal tap is normal. Two separate MRIs have been normal. MRA is normal. Only elevated blood test for MG has come back positive. Extremely thorough blood work has been negative for other conditions. Dr. Gary Weiss feels this isnt too unusual for Myasthenia and may be an atypical symptom due to an unspecified weak muscle bilaterally. Dr. Kennelly at the Mayo Clinic and Dr. Ofner at Vero Neurology do not think this is MG, do not know what it is.

-Eye stability does not improve with closing one eye which indicates a monocular problem according to physicians. Symptoms are the same in either eye, even with one closed.

Patient Goal:

-To have an experienced staff help me or guide me at Bascom Palmer. I need a doctor/team that can be patient and will think outside of the box.

-To have sensitive testing to monitor eye movements. I feel I have a very subtle problem that is being hard to detect with visual eye exams. Request a possible Scleral search coil test.

-Avoid unnecessary treatment for Myasthenia Gravis.

-I am willing to repeat any testing or follow any doctor orders to help this process. I have excellent insurance and I do not have limitations on diagnostic imaging. Prior authorization is not needed for diagnostic imaging.

-Avoid progression in symptoms so I do not become disabled.