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Old 01-14-2020, 12:48 PM #1
EricMatthew3 EricMatthew3 is offline
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Default Opsoclonus Myoclonus

My wife is being treated for what her neurologist thinks is Opsoclonus Myoclonus. I can find very little information on this based on how rare it is.

Some background - she was admitted to the hospital when she was 34 weeks pregnant. She had ocular flutter (eyes involuntarily moving horizontal) and was very shaky when standing or sitting up. She could no longer walk by herself. The first week in the hospital the doctors have given her 5 treatments of high dose steroids, 5 treatments of IVIG. They induced her at 35 weeks stating that deliver was the treatment as they found a case of improvement after delivery. The day after delivery she began receiving plasmapherosis treatments. Today was her 5th treatment. The baby came home 5 days ago and I am beginning to worry about mental health. She has been very strong and positive so far but I'm not sure how long that will last if we are not seeing any improvement.

She has had an MRI, CT scan and all kinds of blood tests. Nothing was found in these tests. Doctors are not able to provide much insight. They basically say these are the treatments we are giving and we will see if anything helps or changes.

I am wondering if this could be related to her flu shot. The symptoms began about 2 weeks after her flu shot and then worsened quickly.

Has anyone had or know someone that has or had this? Should we seek a second opinion? What was their recovery time? Was there full remission or are some symptoms still there? It's hard just waiting day to day without knowing exactly what this is and the prognosis.
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Old 01-14-2020, 02:09 PM #2
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Hi Eric

Welcome to NeuroTalk .

I am sorry to read about your wife.

As you say, opsoclonus myoclonus is very rare but this information may help you and your wife.

Opsoclonus-myoclonus syndrome | Genetic and Rare Diseases Information Center (GARD) – an NCATS Program

All the best.
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