Opsoclonus Myoclonus Syndrome (O.M.S.)
What is Opsoclonus Myoclonus ?
Opsoclonus myoclonus is a rare neurological disorder characterized by unsteady
gait, intention tremor (rhythmic, involuntary motions of the limbs during
voluntary movements), myoclonus (brief, shock-like muscle spasms), and
opsoclonus (irregular, rapid, horizontal and vertical eye movements). Other
symptoms may include dysphasia (difficulty speak), dysarthria (poorly
articulated speech), mutism (inability to speak), hypotonia (decreased muscle
tone), lethargy, irritability, or malaise (a vague feeling of bodily
discomfort). Opsoclonus myoclonus may occur in association with tumors or
Is there any treatment ?
Treatment for opsoclonus myoclonus may include corticosteroids or ACTH (adrenocorticotropic
hormone). In cases where there is a tumor present, treatment such as
chemotherapy, surgery, or radiation may be required.
What is the prognosis?
The prognosis for opsoclonus myoclonus varies depending on the symptoms and
the presence and treatment of tumors. With treatment of the underlying cause
of the disorder, there may be an improvement of symptoms. Spontaneous
remissions (unexplained lack of disease activity) may also occur. Generally
the disorder is not fatal.
What research is being done?
National Pediatric Myoclonus Center (NPMC)
The purpose of a national center for myoclonus is to provide the best care possible for patients whose myoclonus
began during childhood. This care includes making the correct diagnosis,
searching for all reversible (curable) causes, choosing the best drug treatments
available, providing information about myoclonus, obtaining psychological and
emotional support for the children and their families, and bringing them
together with other similar families. We also wish to establish the scope of the
problem and increase awareness among federal, private and pharmaceutical
agencies. Patients with myoclonus otherwise have no advocate. They are often
misdiagnosed, told there is no hope, feel isolated, and are in need of a
concerted effort to better their situation.
The NINDS supports and conducts research on movement disorders such as
opsoclonus myoclonus. Current research is attempting to clarify and expand the
knowledge about movement disorders, and to find ways to prevent and treat
OMS was first described by Dr. M. Kinsbourne in 1962.
Other names for OMS include:
* Opsoclonus Myoclonus Syndrome (OMS)
* Opsoclonus Myoclonus Ataxia (OMA)
* Kinsbourne syndrome
* Myoclonic Encephalopathy of infants
* Dancing Eyes-Dancing Feet syndrome
* Dancing Eyes syndrome
Characteristics/Symptoms of O.M.S./OMS FACTS
After much reading and seeing OMS first hand, I believe the
following facts/points to be general characteristics/symptoms of
First signs of OMS
B. little off-balance
Looks like a
Difficulty to walk, talk, crawl, or
E. Body tremors (shaking all over)
G. Tumors (neuroblastoma) or Viral Infection
and Strabismus (not symptoms at the onset they come roughly 5 months after onset
if the child has had no medicine whatsoever)
I can not at this point confirm point H as this OMS sign was submitted to me
Half of OMS patients have no neuroblastoma. In those cases, doctors think the
disease might be caused by a virus, a known cause of other brain
Symptons after being
diagnosed/treated for OMS
tumor or viral. (OMS FACTS)
The following points were taking out of context from various emails, postings. I
believe the following points to be all valid.
1. " myoclonic jerking " (sleep)
2. " Rage attacks” (will have rages at times). Behavior that is aggressive and
3. " Fine motor skills” (cannot cursive write)
4. " Shy around people”
5. " Speech”
6. " Frustrated” (temper tantrums). Will scream Shut Up, your annoying me etc.
7. " Relapse” the symptoms get worse and better and worse” ( A
cold can trigger
a relapse ).
8. " Eyes constantly flash back and forth rapidly”
9. " Weight loss” (eating, loss of appetite)
10. " Depression”
11. " Lower ability to fight infection”
12. "immune system" A cold will trigger OMS symptoms.
13. OMS is NON FATAL
14. Treatment for opsoclonus myoclonus may include corticosteroids or ACTH
(adrenocorticotropic hormone). IVIG is considered one of the standards of
treatment for OMS by neurologists who treat pediatric OMS — many neurologists
don't even know of it because it is so rare.
15. There is no "cure" for OMS. While there is no cure for OMS there are
treatments that help and sometimes eliminate the symptoms
Brain damage is a common outcome in OMS patients, even in those
who respond favorably to treatment and, in very rare cases,
later show no signs of the disease.
17. Head Aches
18. Stomach Aches
19. OMS will become MORE apparent as your child becomes older.
In the long term, OMS can lead to serious behavioral problems and a dramatic
loss in IQ points.
"Worst case scenario is the IQ drops to between 40 and 80,". "These are
previously normal children. It's very scary."
I’m TIRED of trying to explain to Doctors, teachers that
“ YES THAT IS OMS “ !
I have been told by a specialist that the OMS will be more apparent as your
child becomes older. ( I have recently come to the conclusion that this is
If you have any
other points to add or disagree with my findings please follow
the link below to write a follow up to this message
Characteristics/Symptoms of O.M.S./OMS FACTS
I am by no means a Doctor but do see and have read the same
symptoms/characteristics over and over again.