REGULAR SUPPORT MEETINGS

Goleta

3rd Fridays

MONTHLY

Goleta Valley Community Ctr
12pm - 1:30pm

5679 Hollister Ave, 93117

contact: Mike Jack

 

Thousand Oaks

2nd Thursdays

MONTHLY

Goebel Adult Community Ctr
1pm - 3pm

1385 E Janss Rd

contact: Darlene Feigen

thousandoaksmssupportgroup.org

Arroyo Grande

2nd Tuesdays

MONTHLY (except July & Dec)

1st United Methodist Church
6pm - 8pm

275 N Halcyon Road

contact: Ellen Schrodowski

 

Phases of MS

Multiple sclerosis (MS) is classified into 6 types, characterized by the disease's progression.

Most Common

Relapsing-remitting MS (RRMS). RRMS is characterized by relapse (attacks of symptom flare-ups) followed by remission (periods of recovery). Symptoms may vary from mild to severe, and relapses and remissions may last for days or months. More than 80 percent of people who have MS begin with relapsing-remitting cycles.

Secondary-progressive MS (SPMS). SPMS often develops in people who have relapsing-remitting MS. In SPMS, relapses and partial recoveries occur, but the disability doesn't fade away between cycles. Instead, it progressively worsens until a steady progression of disability replaces the cycles of attacks.

Primary-progressive MS (PPMS). PPMS progresses slowly and steadily from its onset. There are no periods of remission and symptoms generally do not decrease in intensity. About 15 percent of people who have MS have PPMS.

Less Common

Progressive-relapsing MS (PRMS). In this relatively rare type of MS, people experience both steadily worsening symptoms and attacks during periods of remission.

Clinically Isolated Syndrome (CIS). Has been used to describe a first neurologic episode that lasts at least 24 hours, and is caused by inflammation/demyelination in one or more sites in the central nervous system (CNS). Individual may or may not go onto develop MS.

Malignant of Fulminant Multiple Sclerosis. Rapidly progressive disease course. (qualifies for the Compassionate Allowances Program at the Social Security Administration)

Resource: Mayo Clinic

For more info go to: www.nationalmssociety.org/What-is-MS/Types-of-MS

 

50+ Signs and Symptoms of MS

****KEEP A SYMPTOM LOG****

The signs and symptoms of multiple sclerosis are almost uncountable. There are over 50 signs and symptoms linked with multiple sclerosis (MS) - including numbness, depression, vision problems and fatigue. Your symptoms will vary in their duration, severity and treatment. Learn more about the MS symptoms that you may experience and how to manage them. Most of us have experienced pain as a part of multiple sclerosis (MS). MS symptoms can be strange and unpredictable.

Ageusia
Ageusia is the loss of the sense of taste and is a rare symptom of
multiple sclerosis (MS).

Aphasia
Aphasia is difficulty understanding the speech of other people
and/or expressing oneself verbally. While people with multiple
sclerosis (MS) often have trouble finding words or communicating,
this is more often dysphasia, a symptom of MS which is not as
severe as aphasia.

Ataxia
Ataxia is a lack of coordination and unsteadiness. It is a common
symptom of multiple sclerosis (MS).

Ataxia (Sensory)
Sensory ataxia is a lack of coordination caused by numbness in the
feet. It can be a symptom of multiple sclerosis (MS).

Bladder Dysfunction
Bladder dysfunction is one of the most common symptoms of
multiple sclerosis (MS). Problems with urination, whether it be
urinary hesitancy, frequency or incontinence, should never be
ignored.

(BPPV) Benign Paroxysmal Positioning Vertigo
About 20% of people with multiple sclerosis (MS) experience vertigo
at some point. While this can be caused by an MS lesion, it is
actually more likely to be caused by benign paroxysmal positioning
vertigo (BPPV), a condition which is largely unrelated to MS and can
be treated without medications.

Constipation
Constipation is a very common symptom of multiple sclerosis (MS),
with up to 75% of people with MS experiencing it at some point. It is
caused by many different things, including MS lesions and certain
medications.

Cognitive Dysfunction
Cognitive dysfunction is one of the most common symptoms of
multiple sclerosis (MS), yet one of the most overlooked. Problems
with short-term memory, attention difficulties and word-finding
problems are all part of MS-related cognitive dysfunction.

Depression
Depression is a common symptom of multiple sclerosis (MS). It is
often confusing to diagnose, as it shares many of the same
symptoms with MS itself. However, if you have MS and are
experiencing sadness or loss of interest in things, you need to seek
help. A doctor can determine your level of depression and the
appropriate treatment.

Devic’s Disease (Neuromyelitis)
Devic's disease is an inflammatory disease of the central nervous
system in which there are episodes of inflammation and damage to
the myelin (fatty, protective covering of nerves) that almost
exclusively affect the optic (eye) nerves and spinal cord. It usually
causes temporary blindness, occasionally permanent, in one or
both eyes. It can also lead to varying degrees of weakness or
paralysis in the legs or arms, painful spasms, loss of sensation, and
bladder or bowel dysfunction from spinal cord damage.

Diplopia or Double Vision
Diplopia, or "double vision" is a common symptom of multiple
sclerosis (MS).

Dysphagia
Problems swallowing as a Symptom of Multiple Sclerosis
Problems with swallowing, called dysphagia, is a common symptom of
multiple sclerosis (MS). It includes choking, coughing, gagging and
problems with the voice.

Dysarthria
Dysarthria is a fairly common symptom of multiple sclerosis (MS). It
is a speech disorder in which the pronunciation is unclear, but the
meaning of what is said is normal.

Dysdiadochokinesia
Dysdiadochokinesia is the inability to perform rapid, alternating
movements. It is a common sign of multiple sclerosis (MS).

Dysesthesia
Dysesthesia is a condition in which a light touch is perceived as
painful or unpleasant. It is a common sensory symptom of multiple
sclerosis (MS).

Dysmetria
Dysmetria is the inability to coordinate movements, characterized
by “overshooting” or “undershooting” the intended position of the
hand, arm or leg. It is a common symptom of multiple sclerosis.

Dystonia
Dystonia is impaired or disordered muscle tone, which is
characterized by slow movement or an extended, sustained spasm
in a group of muscles. It can be a symptom of multiple sclerosis
(MS).

Dysphonia
Dysphonia is an impairment of the voice and is a fairly common
symptom of multiple sclerosis (MS).

Dysphasia
Dysphasia is difficulty understanding or using language. It can be
a symptom of multiple sclerosis (MS).

Erectile Dysfunction
Erectile dysfunction is a very common symptom of multiple
sclerosis (MS), experienced by up to 85% of men with MS.

Facial Pain- Trigeminal neuralgia
Trigeminal neuralgia, also known as tic doloureux, is perhaps the
most painful symptom of multiple sclerosis (MS). Experienced by
4% of people with MS, it is a sharp, severe pain in the lower part of
the face, often brought on by chewing or touch.

Fatigue
Fatigue is the most common symptom of multiple sclerosis - it is
estimated that between 85 and 95 percent of people with MS
experience MS-related fatigue at some point. At its worst, it is the
result of many factors combined, including the MS disease process
itself, as well as side effects from medications, exacerbations of
other symptoms, and lack of exercise and good nutrition.

Foot Drop
www.Walkaide.com
Foot drop is when the front of the foot falls behind and tends to
drag on the ground.

Heat Intolerance
www.msassociation.org/programs/cooling
If you have multiple sclerosis (MS), there is a good chance that you
have felt negative effects from the heat in the form of increased
symptoms from pseudoexacerbations. These symptoms can range
from annoying to debilitating, but usually disappear quickly once
you cool down.

Headaches
People with multiple sclerosis (MS) are more likely to experience
migraines or cluster headaches than those in the general
population. There are several different causes for headaches in
people with MS, including: medication side effects, lesions, optic
neuritis and depression.

Hemiparesis
Hemiparesis is weakness or partial paralysis on one side of the
body. It can be a symptom of multiple sclerosis (MS).

(IEED) Involuntary emotional expression disorder
Also known as pseudobulbar affect, is a symptom that affects
approximately 10% of people with multiple sclerosis (MS). IEED is
characterized by outbursts of crying or laughter, but without
corresponding emotions behind these outbursts. Learn more about
IEED to make sure that you are receiving the correct diagnosis and
treatment.

Loss of Proprioception
Proprioception is the sense of one's body in relation to itself and the
world. Multiple sclerosis (MS) often affects a person's sense of
balance by slowing down transmission of signals that regulate
proprioception. This is known as Romberg's sign.

"MS Hug"
“Hug” or Girdle-Band Sensation feeling of tightness as if a belt was
being tightened around your body parts. The “MS hug” or girdleband
sensation is a symptom of multiple sclerosis, resulting in a
painful or tingling feeling around the torso or in one area on the
abdomen or chest.

Numbness and Tingling (Parasthesia)
Numbness and tingling is a very common symptom of multiple
sclerosis (MS), known as parasthesia. This type of symptom is
described as tingling, burning, prickling, itching, numbness or the
feeling of “pins-and-needles.”

Nocturia
Nocturia is the need to urinate frequently at night.

Nystagmus
Nystagmus means involuntary, rapid repetitive movements of the
eyes.

Neuralgia
Neuralgia is sharp pain in a nerve or along a nerve pathway. It can
be a symptom of multiple sclerosis (MS).

Optic Neuritis
Optic neuritis is a fairly common symptom of multiple sclerosis
(MS), affecting up to half of people with MS. Also, 50 to 60 percent
of people experiencing optic neuritis will go on to develop MS in the
next 10 years. The main symptoms of optic neuritis are: pain when
moving the eyes, absence of color in viewed objects and blurring or
blank spots in the visual field.

Paresis
Paresis is muscle weakness or incomplete paralysis. It is a common
symptom of multiple sclerosis (MS).

Parasthesia
Parasthesia describes an abnormal sensation that is not typically
painful.

Pain
Pain is now recognized as one of the most common symptoms of
multiple sclerosis (MS). There are several causes, including the
disease process itself or as a result of other symptoms. Some types
of MS-related pain are sudden and fleeting, while others are more
chronic.

Paroxysmal
Many of us with multiple sclerosis (MS) have experienced the
phenomenon of paroxysmal symptoms -- those that come on
suddenly, bother us for a short time (seconds or minutes), and then
disappear as suddenly as they came. Whether it is an episode of
double vision or a prickly feeling on my face, these moments
usually lead me to wonder a number of things. Is this a relapse?
How bad is this going to get? Does this mean my MS is progressing?

Pupillary Defect (APD)
People with MS occasionally experience a phenomenon known as
afferent pupillary defect (APD), which is when one pupil dilates
when it would normally constrict. This is due to inflammation of the
optic nerve, or optic neuritis.

Respiratory Problems
Many people with multiple sclerosis (MS) have low respiratory
function, even though they might not have noticed it or associated
it with MS. Coughing, frequent sighing and shortness of breath can
all be part of MS.

Restless Legs Syndrome
Research shows that people with multiple sclerosis (MS) are about
five times more likely to have restless legs syndrome (RLS)
than people in the general population. Restless legs syndrome
symptoms are very different from other symptoms of MS, such as
spasticity and parasthesia (numbness and tingling).

Seizures
Epilepsy and seizures as a symptom of multiple sclerosis (MS) are
rare, only occurring in 2 to 3 percent of people with MS. However,
this is still higher than in the general population. These seizures in
people with MS tend to be either tonic-clonic or partial seizures,
and can usually be treated very successfully with medications.

Spasticity and Stiffness
Spasticity is a common symptom of multiple sclerosis (MS). Much
spasticity is experienced as slight to moderate difficulty moving, as
muscles don't relax as quickly or easily as they should. However,
some spasticity is more dramatic and can cause long-term problems
and contribute to lack of mobility.

Spasms (Flexor)
Flexor spasms are a form of spasticity in which the legs or other
limbs are pulled upward into a clenched position.

Spasms (Extensor)
Extensor spasms are a form of spasticity in which the legs suddenly
straighten into a stiff, extended position. This is a fairly common
symptom of multiple sclerosis (MS).

Scanning Speech
Scanning speech is a speech disorder in which syllables of words
are separated by pauses. It can be a symptom of multiple sclerosis
(MS).

Scotoma
A scotoma is an area of reduced vision or blindness. It is a common
symptom of multiple sclerosis (MS), indicating the presence of optic
neuritis.

Tremor
Tremor is a very common symptom of multiple sclerosis (MS). It can
happen when a person is trying to do something with their hands or
when standing or sitting, and severity can range from barely
noticeable to significantly interfering with daily tasks. Learn more
about tremor as a symptom of MS.

Trigeminal Neuralgia
Trigeminal neuralgia affects the trigeminal nerve, one of the largest
nerves in the head. The trigeminal nerve sends impulses of touch, pain,
pressure, and temperature to the brain from the face, jaw, gums,
forehead, and around the eyes

Vertigo
Vertigo is a fairly common symptom of MS, occurring in about 20%
of people at some point. The good news it that it is not a permanent
symptom, and may not even indicate a new lesion or inflammation,
as vertigo can have non-MS causes.

Resources:
MS Association
Mayo Clinic
Mult-sclerosis.org
Medinenet.com