Ghosting vision for a year now - no diagnosis

[LillyMe]

I have had ghosting vision for a full year with no diagnosis.  I've had two ER visits, a CT, an MRI, a stress echocardiogram, been tested fro myasthenia gravis, MS,too many things to list here.  Still no dx.  Three opthtahomologists, a cardiologist, two neurologists, two different insurance companies, an endocrinologist, and still nothing.  Scientist friends have suggested ophthomoplegia / sixth nerve palsy, mitochondrial disease, ocular myopathy, also known as mitochondrial encephalomyelopathy with ophthalmoplegia or progressive external ophthalmoplegia.

How bad does this have to get before I get a formal dx?  When does it become so bad I cannot drive?  I see figure 8s for traffic signals.  The diplopia is vertical.  It comes and goes, some days are fine, some days are really bad, some days are mixed.  Neurologist and all other specialists don' care, have given up / lost interest. I do not know what to do.  

[LillyMe]

Thank you for that suggestion, Dr. Fazio.  When I went to UCLA last year I had insurance that covered the visit.  Now I am on Kaiser, so any visit to UCLA is off insurance.  My Kaiser docs have lost interest and have no further plans to assist me.  I am thinking of going off insurance to get another MRI, wondering if there are possibly now MS lesions that did not show up last year.  In either case, I have to carefully think about spending that kind of money.

[Doreen Fazio, M.D.]

Call Dr. Anthony Arnold at Jules Stein Eye Institute.  He is the head of the Neuro-ophthalmology department.  His number is [phone].

[LillyMe]

Thank you for your reply, Dr. Vosoghi.  I did make an appointment at UCLA, and asked for a neuroophthalmologist.  I instead got an ophthalmologist.  Though my exam was thorough, it was not neurological.  I am convinced it is a neurological issue.  

[Houman Vosoghi, MD]

You should see a neuroophthalmologist at a university who will figure out what the cause is.  There must be an explanation.

HV