***
Ray's Illness -Multiple
System Atrophy ***
Sometimes referred to as Shy-Drager
or Parkinson's Plus
For my "Blue Sunshine" --Created
with love and devotion by your wife,
Clare Strand
May 2009
Message to my deceased
husband: the autopsy affirmed
that you did indeed have MSA,
as your own research into this
disease had concluded. BRDU Bromodeoxyuridine,
you suspected. A health hazard.
Probably true. You are gone
from this lifetime. I miss
you much.
Multiple System
Atrophy(MSA) is a complex
neurodegenerative
disorder that affects multiple areas of
the brain. You may also know it as
Shy-Drager Syndrome(SDS), Striatonigral
Degeneration(SND) or Sporadic Olivopontocerebellar
Atrophy(OPCA). These three disorders
have now been lumped together and are considered
one disorder by the MSA research experts.
Shy-Drager Syndrome
Multiple system atrophy with autonomic
failure, also called Shy-Drager syndrome,
is a progressive disorder of the
central and autonomic nervous systems.
The disorder is characterized by
postural hypotension--an excessive
drop in blood pressure which causes
dizziness or momentary blackouts
upon standing or sitting up. There
are 3 types of Shy-Drager syndrome:
Parkinsonian-type which may include
symptoms of Parkinson's disease such
as slow movement, stiff muscles,
and mild tremors; cerebellar-type
which may include problems such as
loss of balance and the tendency
to fall; and combination-type which
may include symptoms of both types
1 and 2. Parkinsonian symptoms and
symptoms of autonomic dysfunction
such as constipation and sexual impotence
in males predominate early in the
course of the disease. Constipation
may be unrelenting and hard to manage
in some patients. Shy-Drager may
be difficult to diagnose in the early
stages; however, within a year of
onset most patients develop postural
hypotension. For the majority of
patients, blood pressure is unstable--often
fluctuating up and down--and causes
severe headaches. Other symptoms
may also develop, such as generalized
weakness, double vision and/or other
vision disturbances, impairment of
speech, sensory changes, difficulties
with breathing and swallowing, irregularities
in heart beat, inability to sweat,
and diarrhea.
Shy-Drager usually ends in death
7 to 10 years after the onset of
symptoms. Pneumonia is the most common
cause of death, although irregularities
in heart beat may be responsible
for death in some patients.
Information provided by the
National Institute of Neurological
Disorders and Stroke
National Institutes of Health
GENERAL INFORMATION:
Excellent sources of information
on MSA written in laymen's terms
can be found here:
If you need more information on
Hereditary OPCA please contact the
National Ataxia Foundation. http://www.ataxia.org
http://www.shy-drager.org
http://www.shy-drager.org/msa_faq.htm
http://www.wwwombat.com
http://www.msaweb.co.uk/msaguide.htm
http://www.msaweb.co.uk/faq.htm
http://msainfo.tripod.com/
An extraordinary site added 10/2/08: http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4791
Some other sites with information
on MSA:
http://groups.yahoo.com/links/shydrager
http://www.acnr.co.uk/pdfs/volume3issue6/v3i6reviewart1.pdf
http://www.emedicine.com/neuro/topic671.htm
http://www.emedicine.com/neuro/topic282.htm
http://www.emedicine.com/neuro/topic354.htm
http://www.accesswave.ca/~pbower/msa_gilman.htm
RESEARCH:
There are now two major groups of researchers
in the world dedicated to studying MSA.
- The North American Multiple System
Atrophy Study Group(NAMSA-SG)
See this site for information about their
new 5 year $7 Million
research study that is currently recruiting
patients.
http://health.ucsd.edu/news/2003/12_05_Shults.html
To learn more or to register for the study
contact one of the study
centers. You'll find the list here:
http://groups.yahoo.com/group/msa-news
- European Multiple System Atrophy Study
Group(EMSA-SG) See http://www.emsa-sg.org
Current research articles on MSA can be
found by searching Pubmed at:
http://www.ncbi.nlm.nih.gov/entrez
Clinical trials accepting MSA patients
can be found by searching:
http://www.clinicaltrials.gov
SUPPORT ORGANIZATIONS:
Multiple System Atrophy is recognized by
several charitable organizations. Their
support groups all welcome people with
MSA, their caregivers and relatives.
The SDS/MSA Support Group in the USA
http://www.shy-drager.org
Their toll free lines are staffed 24 hours
a day for personal support.
From North America call: 1-866-737-4999
and 1-866-737-5999
Note that a list of local area support
groups for MSA can also be found
at this site.
The Sarah Matheson Trust for Multiple System
Atrophy in the UK
http://www.msaweb.co.uk
ARAMISE - Association for Research on MSA,
Information, Help to patients
in Europe (French Language Site)
http://ams.aramise.free.fr
The Danish MSA Society, Landsforeningen
Multipel System Atrofi (Danish Language
site)
http://www.msa-danmark.dk
The National Ataxia Foundation in the US
(They recognize MSA as a form of sporadic
ataxia)
http://www.ataxia.org
The National Dysautonomia Research Foundation
in the US (They recognize MSA as a dysautonomia
- disorder of the autonomic nervous system).
http://www.ndrf.org
SIMILAR DISORDERS:
Various Parkinson Disease Societies and
Foundations worldwide recognize MSA as
a "Parkinson-Plus" Disorder. Many
people with MSA are first diagnosed with
Parkinsons
Disease(PD) or with another of the Parkinson-Plus(PD+)
disorders which all have similar symptoms
as MSA.
Parkinson-Plus disorders include Progressive
Supranuclear Palsy(PSP), Corticobasal Ganglionic
Degeneration(CBDG) and Lewy Body Dementia(LBD)
Do check out support groups for PD and
PD+ disorders as well as they also usually
welcome people with MSA.
For more information on Parkinson-Plus
Disorders:
http://www.emedicine.com/neuro/topic596.htm
http://www.parkinsons-information-exchange-network-online.com/archive/091.html
ONLINE SUPPORT
IN ENGLISH:
There is an online support group "mailing
list" for MSA at
http://groups.yahoo.com/group/shydrager
Join the group online and read messages
there or subscribe and receive daily emails
by sending a blank email to shydrager-subscribe@yahoogroups.com
IN FRENCH:
For those who can converse in the French
language there is
another group located at:
http://fr.groups.yahoo.com/group/shydragers
CHAT ROOMS:
There is an MSA Chat Room located here:
http://www.accesswave.ca/~pbower/msachat.htm
The current chat schedule is posted. Note
to join the chat you will need to download
chat software first from:
http://wp.netscape.com/aim/index_ie5.html
NEWSLETTERS
There is an MSA newsletter available online
at:
http://groups.yahoo.com/group/msa-news
(Usually updated monthly)
Subscribe online to have it delivered to
your inbox
or send a blank email to: msa-news-subscribe@yahoogroups.com
The Sarah Matheson Trust for MSA in the
UK also posts
their newsletter to:
http://www.msaweb.co.uk/newsletter.htm
(Usually updated quarterly)
MSA Information in 0ther
Languages:
Dutch:
http://www.ataxie.nl/ataxie/diagnoses/msa.html
French:
http://ams.aramise.free.fr
http://www.emsa-sg.org/patient/fra/index.htm
Danish:
http://www.msa-danmark.dk/msa.asp
http://www.emsa-sg.org/patient/dan/index.htm
Portuguese:
http://www.emsa-sg.org/patient/por/index.htm
Slovenian:
http://www.emsa-sg.org/patient/slo/index.htm
Spanish:
http://www.emsa-sg.org/patient/esp/index.htm
Italian:
http://www.emsa-sg.org/patient/ital/index.htm
Hebrew:
http://www.emsa-sg.org/patient/isl/index.htm
German:
http://www.emsa-sg.org/patient/deu/index.htm
http://www.kup.at/kup/pdf/4441.pdf
Swedish:
http://www.emsa-sg.org/patient/swe/index.htm
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