General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below.


advertisement
Reply
 
Thread Tools Display Modes
Old 01-14-2020, 12:48 PM #1
EricMatthew3 EricMatthew3 is offline
Newly Joined
 
Join Date: Jan 2020
Posts: 1
3 yr Member
EricMatthew3 EricMatthew3 is offline
Newly Joined
 
Join Date: Jan 2020
Posts: 1
3 yr Member
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.
EricMatthew3 is offline   Reply With QuoteReply With Quote

advertisement
Old 01-14-2020, 02:09 PM #2
kiwi33's Avatar
kiwi33 kiwi33 is offline
Grand Magnate
 
Join Date: Jan 2015
Location: Sydney, Australia.
Posts: 3,093
8 yr Member
kiwi33 kiwi33 is offline
Grand Magnate
kiwi33's Avatar
 
Join Date: Jan 2015
Location: Sydney, Australia.
Posts: 3,093
8 yr Member
Default

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.
__________________
Knowledge is power.
kiwi33 is offline   Reply With QuoteReply With Quote
Reply

Tags
day, doctors, treatment, treatments, weeks

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Does anyone have SPINAL MYOCLONUS or PALATAL MYOCLONUS? Topsie Movement Disorders 28 12-01-2015 06:12 AM
Myoclonus walker604 Movement Disorders 32 02-17-2015 08:20 PM
myoclonus ? toyL Parkinson's Disease 2 03-14-2012 12:14 PM
Spinal Myoclonus and Palatal Myoclonus??? Topsie Reflex Sympathetic Dystrophy (RSD and CRPS) 15 06-16-2011 04:42 PM
myoclonus, opsoclonus with seizure dx linda_sd02 General Health Conditions & Rare Disorders 0 05-11-2011 02:36 PM


All times are GMT -5. The time now is 07:06 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.