Thank you for providing this forum.
I was recently hospitalized and diagnosed with Miller Fisher syndrome. It began one day with distorted vision and by the next morning I could not
controlControl
Control rx my motor functions and my vision was
doubleDouble-tussin dm. The neurologist ordered every tetst imaginable, blood, CT,
tensilonTensilon test,
cranialCranial ct scan
Increased intracranial pressure
Intracerebral hemorrhage
Mri of the head
Pseudotumor cerebri
Temporal arteritis and spinal MRIs,
lumbarBack pain - low
Cerebral spinal fluid (csf) collection
Herniated lumbar disk
Herniated nucleus pulposus
Lumbar puncture (spinal tap)
Lumbar spinal surgery - series
Lumbar vertebrae
Spinal surgery - lumbar
Vertebra, lumbar (low back) punctureAcupuncture
Alternative medicine - pain relief
Cerebral spinal fluid (csf) collection
Cuts and puncture wounds
Emergency airway puncture
Laceration versus puncture wound
Lumbar puncture (spinal tap)
Venipuncture, EMG etc.
My dilemmas is, nothing unusual has shown up in the diagnostic work. All of the tests were withing the normal range. There was a very small brain lesion on the MRI but I was told, not in an area likely to cause the type of motor problems I was having. They initially began treating me with steroids for MS, but based on the presence of ophthalmoplegia and lack of reflexes, changed the diagnosis to Miller Fisher. I was given 5 days of IVIg and released. I am still weak - but can walk - although the double vision persists.
During a followup appointment last week, my neuro told me that a blood antibody test for Miller Fisher had just come back "negative" but they are standing by the diagnosis based on my symptoms and the response to IVIg.
My question then is, what else could I have or be tested for? I was told there is a 95% detection rate for this antibody test and I was hoping it would confirm MF or lead us to explore somtehing else. Now I'm trying to decide if I need to seek more tests in case it ISN'T Miller Fisher. Also, is there a typical recovery time for regaining one's sight after MF?
Thanks for your help.