is US Against MS? United
Support Against Multiple Sclerosis is an all volunteer
organization dedicated to helping Marylanders with Multiple Sclerosis.
was it founded? Us
Against MS was founded in 1985.
US Against MS the same as the National Multiple Sclerosis Society?
No. Although our organizations
have similar goals and work concurrently with each other, each organization
is independent and has its own unique approach to working with MS
patients and their families. US Against MS is not affiliated with
any national organization.
did you start a separate charity?
Each of the founding
members of US Against MS either has MS or has a family member or
close friend who has the disease. Everyone involved in establishing
our all volunteer charity wanted to find ways to offer support services,
equipment and information to patients and their families on an individual
what sort of activities do you typically engage?
As a small group focused
on providing information and services that would enhance the daily
life and activities of MS patients and their families, we realized
that funding large scale research projects or developing the political
clout to effect legislation would be beyond our scope. Instead,
we have concentrated most of our energy on developing programs that
complement rather than duplicate those already available in our
does USAMS raise its money?
The main source of our
fund raising is derived from sales of second hand goods donated
in our name to a local thrift store and has been in operation since
1990. In addition, we hold an annual fundraising event which has
included a Chesapeake Bay cruise, a fashion show, a celebrity cocktail
party, a first run movie with a silent auction. For more information
on this year's event, please link to our Fundraising
page elsewhere on this site. Also, many people make contributions
to USAMS in honor or memory of loved ones.
does USAMS use the money it raises?
In 1992, US Against MS
established the Kenneth P. Johnson MS Day
Program at Montebello Rehabilitation Hospital. We also funded
a four bed inpatient unit devoted solely to the treatment of MS
patients the first of its kind in the Baltimore area. Subsequently,
the Day Program was relocated
to the University of Maryland Medical System facility at Kernan
Rehabilitation Hospital and operates near capacity four days a week.
We also fund the MS Swim
Program at the Western Family YMCA in Catonsville, MD. In
addition, we provide grants for equipment, services, and home modifications
to patients on an individual basis.
Currently, we are trying
to build an endowment that will fund our programs in perpetuity.
much money do you use to support your programs?
Because our officers
and Board of Directors are all
volunteers and thanks to the generosity of many businesses that
donate goods or services, we are able to maximize the efficient
utilization of the funds we raise. In a typical year, we will use
98% of the funds we raise to support our programs or help to build
our endowment. Please feel free to examine our Financial
Statements published elsewhere on this site.
can I help US Against MS?
There are many ways you
can help USAMS. You can contribute money by mailing it to the address
at the bottom of this page. You can contribute your useable second
hand goods and clothing to one of our Thrift
Stores. You can also Volunteer
to help in one of our programs or to become a Board
Member. Caring and Active individuals are always welcomed.
is multiple sclerosis?
Multiple sclerosis, commonly called MS is a
chronic, incurable disease of the central nervous system (brain
and spinal cord) that is characterized by relapses and remissions
of neurological symptoms. For most individuals diagnosed with the
disease, it begins with periods of symptoms followed by periods
of time that are symptom free, or at least stable. This is often
termed relapsing-remitting MS. After approximately 10 years about
˝ of those with relapsing –remitting disease will begin to notice
less relapses, and more progression or worsening of symptoms. This
is termed secondary-progressive MS. About 10% of patients will present
with progressive disease, without attacks or relapses; and without
remissions. This is termed primary-progressive MS.
are the typical symptoms associated with MS?
The symptoms of MS vary quite a bit. However,
it is common to see visual disturbances such as double vision, or
temporary vision loss; impaired coordination; numbness and tingling,
weakness, bladder urgency or frequency, and significant fatigue.
The most common symptom is fatigue, which affects about 70-80% of
all those with MS.
What causes MS?
The cause of MS is unknown. It is theorized
that there is a genetic susceptibility combined with a viral exposure
in childhood. Somehow, this causes the immune system to be stimulated
to produce inflammation in the central nervous system. The stage
set in childhood is then triggered in early adulthood and symptoms
of MS appear.
Is MS life threatening?
MS is rarely life threatening. In the small
percentage of people who become severely disabled due to MS and
have little mobility there is a greater chance of complications,
such as infections, that can be life threatening.
At what age is a person most
likely to become ill with MS?
The age range for MS is wide, from 15-50. In
addition, there are a few people diagnosed in childhood, and some
over the age of 60. Typically, the diagnosis is made during the
20's and 30's.
Do all MS patients wind up
in a wheel chair or bedridden?
No, all patients with MS do not become wheelchair
bound or bedridden. About 10-15% of people with MS become significantly
What is the difference between
degenerative MS and exacerbating remitting MS?
know someone who had symptoms for many years before the problem
was diagnosed as MS. Why did it take so long to diagnose?
MS can be difficult to diagnose. There is no
single test that is diagnostic of MS. History, neurological exam,
MRI, and sometimes other tests such as a spinal tap make the diagnosis.
In addition, the diagnosis of MS requires at least two episodes
of neurological symptoms to fulfill the "multiple" of multiple sclerosis.
This often requires observation of the individual over time. Sometimes
the early symptoms are subtle, and could be attributed to something
there any drugs to treat MS?
Pharmacological treatment of MS includes treatment
for acute relapses, treatment of symptoms and also treatment of
the disease itself. New drugs, called immunomodulating agents have
changed the way MS is treated, as they have the ability to change
the natural course of the disease. Betaseron, Avonex, and Copaxone,
are injectable drugs that are given regularly to reduce the number
of relapses and to slow or delay progression of the disease. Betaseron
and Avonex are both interferons, specifically, interferon beta.
Copaxone is a synthetic agent composed of four different amino acids.
Betaseron and Copaxone are given subcutaneously (an injection just
below the skin) and Avonex is given intramuscularly (an injection
into the muscle).
Are any other treatments
or therapies available?
Relapses of MS are treated with high doses of
steroids. These are not the type of steroids that athletes have
been know to use, but rather the type that can reduce inflammation
very quickly. Steroids are given to hasten recovery from a relapse.
They do not offer any long-term benefit, but are useful to reduce
symptoms fairly quickly.
Although the use of Avonex, Betaseron and Copaxone
has had a beneficial effect on the treatment of MS, many individuals
still have troublesome symptoms. These are treated using medications
as well as rehabilitation techniques.
Are there doctors who specialize
in the treatment of MS?
Yes, there are physicians that specialize in
the treatment of multiple sclerosis. In Maryland, there are 6 physicians
at the University of Maryland that specialize in research and treatment
of multiple sclerosis. Throughout the world there are many centers
that specialize in MS care and research.
can I find help and information in my area?
Local MS organizations such as US Against MS,
and The National MS Society have
valuable information regarding MS. In addition, there is a Consortium
of MS Centers that exists to share information regarding the
treatment of MS, and to advance the treatment of the disease. This
organization can provide information regarding MS specialists and
MS centers in North America.
Against MS would like to thank Kathy Costello, RN of the UMMC Maryland
Center for Multiple Sclerosis for her assistance in the preparation
of answers to the questions in this section.
there are over 125 books about available about multiple sclerosis.
Many of these books are highly technical in nature. The list below
is a small sample of books technical and otherwise. Their inclusion
on this site does not constitute an endorsement or recommendation
of any author or content by US Against MS. For more information
about these titles or to seek other titles, please visit your local
bookstore or online retailer.
- Living With Multiple Sclerosis - A Wellness Approach - George
H. Kraft, M.D.
- 300 Tips for Making
Life With Multiple Sclerosis Easier - Shelly Schwartz
- All of a Piece:
A Life With Multiple Sclerosis - Barbara D. Webster
- Coping When a Parent
Has Multiple Sclerosis - Barbara Cristall
- Living Well With
MS: A Guide for Patient, Caregiver and Family - David L. Carroll
- Multiple Sclerosis:
The Questions You Have, The Answers You Need - Rosalind Kalb,
- Multiple Sclerosis:
The Facts You Need - Paul O’Connor, M.D.
- Advances in the
Immunopathenogenesis of Multiple Sclerosis - D. Gambi, Ed.
- Multiple Sclerosis:
Aguide for the Newly Diagnosed - Nancy J. Holland
- Principles of Treatments
in Multiple Sclerosis - Hawkins & Wolinsky, Eds.
- Therapeutic Claims
in Multiple Sclerosis: A Guide to Treatments - William Sibley
- Women Living With
Multiple Sclerosis - Judith Lynn Nichols
- Multiple Sclerosis
Subject Reference and Research Guide - Oliver Fraser
Aspects of Multiple Sclerosis - Stephen M. Rao, Ed.
- Multiple Sclerosis
Fact Book - Richard Lechtenberg, M.D.
what is the difference between occupational therapy and physical
is basically focused on how a patient is "occupied" and OTs are
experts in restoring function in activities of daily living (bathing,
dressing, eating, etc.) as well as adapting a person's environment
to minimize obstacles and maximize ability. Physical therapy frequently
focuses on the functional abilities, including ambulation, balance,
corrective stretching and strengthening, and similar work. In the
care of persons with MS these professions complement and overlap
a lot. A team approach is ideal.... especially when hand function
either type appropriate for MS patients? If so, is there any time
when would one be preferred over the other?
In addition to the
comments above, both PT and OT are appropriate for MS patients.
A physical therapist should definitely be consulted if there are
difficulties with ambulation, leg spasms, or back pain, and an OT
consult is advisable if there are problems with upper extremity
function. Both are competent to address wheelchair mobility, transfers,and
related difficulties. Additionally, if a person with MS experiences
difficulty with swallowing or speech, a licensed speech therapist
can perform an evaluation and provide treatment strategies.
there physical therapists who specialize in the treatment of patients
Yes, there are physical
therapists who have chosen to have MS treatment as a specialty or
subspecialty. These therapists have taken considerable continuing
education to find out more about the disease and effective rehabilitation
approaches. More importantly, they have had experience treating
many persons with MS and are sensitive to the unique nature of the
therapists always affiliated with a hospital such as Kernan’s or
a program such as the MS Day Program or are there therapists in
work in a variety of settings, including acute general hospitals,
outpatient clinics or private practices, inpatient rehabilitation
hospitals, skilled nursing facilities, the school system, home health
agencies, and even fitness centers.
factors does a therapist use to determine the proper course of treatment
for MS patients?
Hopefully a therapist
will consider many factors in determining the course of treatment
for persons with MS. These can include the patient's disease history
(how function has changed since diagnosis, for example), their current
level of function and tolerance for activity are also important
as is setting realistic short and long-term goals. A therapist might
also take into account such practical considerations as transportation,
support at home, and so on.
all MS patients benefit from physical or occupational therapy regardless
of the severity of their symptoms?
I'm prejudiced here,
but as a physical therapist, I think that PT and OT have something
to offer every person with MS, even if it is limited to the education
of the patient and family, recommendation of an assistive device
or ambulation aid, or suggestions regarding how to adapt the home
how often should a patient see a therapist?
There is no "typical"
with MS! Everyone's needs are different. However, since people must
deal with MS symptom-management for their whole life, I prefer to
see most of my patients for several weekly or monthly sessions to
develop a home program, then have them return for follow-up as needed.
a physical therapist design an exercise program for the patient
and caregiver to use on days when the patient doesn’t see the therapist?
Yes, as mentioned
above, if the person with MS (with the help or support of family)
is given an appropriate exercise program that addresses functional
goals, the daily home program can be effective especially in reversing
secondary (or "disuse") weakness due to inactivity.
there a danger of patients overworking themselves in physical therapy?
many persons with MS have had negative experiences by pushing too
hard in an attempt to strengthen weakened limbs. Sometimes this
is the fault of a well-intentioned but uninformed therapist. Other
times the patient is responsible for a "no pain, no gain" mentality,
denying the fatigue with negative consequences. The exhaustion is
usually just temporary, but musculoskeletal injuries can occur that
will interfere with function for a long time.
the costs of physical therapy generally covered by health insurance?
covers physical therapy but every policy is different regarding
co-pays, deductibles, need for Primary Care Physician (PCP) referral,
and other policy specific requirements. Each person should check
with their insurance company to determine their coverage.
you know of any resources I can use to find a therapist in my area?
The National Multiple
Ssclerosis Society, Maryland Chapter, has a list of some therapists
on file, which will be updated and expanded later this year. The
best way to find out whether the therapist(s) in your area have
experience with MS is to ask them! Recommendations from friends,
members of your support group, or your physician are a good place
US Against MS would like to thank Pat
Provance of Kernan Hospital for her assistance in the preparation
of answers to the questions in this section.