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 control my motor functions and my vision was double. The neurologist ordered every tetst imaginable, blood, CT, tensilon, cranial and spinal MRIs, lumbar puncture, 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.
Sorry to hear about your symptoms, I realize they are very scary. I think I would agree that you likely had Miller-Fisher variant of Guillian-Barre syndrome. We do not always find the antibody (GQ1b) in all patients. We have seen this in our practice. Most people recover fully. It does take awhile, our most recent patient has taken several months (4-6) before most all the symptoms have resolved. Recovery is very patient dependent and is related to the degree of the symptoms. So, it is difficult to give precise answers to recovery time. I would tell you that if symptoms reoccur or if new symptoms occur that you should begin to question the diagnosis. If you keep getting better, I would say that Miller-Fisher is the correct diagnosis. Maybe an EMG might help clarify matters, but really I wouldn't recommend one unless things change for the worse.
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