*** Multiple System Atrophy Information ***
Multiple System Atrophy(MSA) is a complex neurodegenerative disorder that affects multiple areas of the brain. Autonomic or urogenital dysfunction are the hallmark symptoms accompanied by either cerebellar ataxia or parkinsonism or both. There are two categories or MSA known as MSA-C (cerebellar) and MSA-P (parkinsonism). Previously the term MSA-A (autonomic) was used but this has been discontinued since autonomic or urinary symptoms are required for a diagnosis of probable MSA. As of 2014 there is no reliable biomarker to diagnose MSA with 100% certainly. Brain autopsy within 24 hours of death is currently the only method of diagnosing definite MSA.
Excellent sources of information on MSA with links to other articles and support organizations world wide can be found here:
See also:
http://www.Multiple-System-Atrophy.org
http://www.msatrust.org.uk/living-with-msa/
http://surfcoastwombat.com/
http://www.emsa-sg.org/index.php?id=8
http://www.World-MSA-Day.org
You may also know MSA 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. By definition, MSA is a sporadic (non-hereditary) disorder. There are
some hereditary forms of cerebellar ataxia known as SCA1 thru SCA21
these disorders do not fall under the MSA umbrella but it is recommended that
anyone with ataxia symptoms be screened genetically to rule these out.
If you need more information on Hereditary Ataxia please contact the National
Ataxia Foundation. http://www.ataxia.org
MSA RESEARCH:
There is now a World MSA Study Group led by Professor Gregor Wenning made up of MSA researchers from around the globe. There goal is to work towards uncovering the exact cause and finding effective treatments and ultimately a cure. You can read their mission statement here:
If you have a question for Professor Gregor Wenning please feel free to write him via this site:
http://www.msaawareness.org/?page_id=26
See also the European Multiple System Atrophy Study Group(EMSA-SG)
http://www.emsa-sg.org
Current research articles on MSA can be found by searching Pubmed at:
http://www.ncbi.nlm.nih.gov/pubmed/
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 Multiple System Atrophy Coalition (USA)
http://www.Multiple-System-Atrophy.org
Their toll free lines are staffed 24 hours a day for personal support.
From Canada or USA call 1-866-737-5999 or 1-866-737-4999
See this list of local area support groups for MSA (US and Canada)
http://www.Multiple-System-Atrophy.org/local-support-groups
The Multiple System Atrophy Trust (UK)
http://www.msaweb.co.uk
ARAMISE – Association for Research on MSA, Information, Help to patients
in Europe (French Language Site)
http://asso.orpha.net/ARAMISE/cgi-bin/index.php
The Danish MSA Society, Landsforeningen Multipel System Atrofi (Danish Language site)
http://www.msa-danmark.dk
Benelux support group for people with MSA(Multi-lingual site)
http://www.msa-ams.be
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
FACEBOOK:
Become a fan of “Miracles for MSA” and invite your friends. Some small miracles are already happening, let’s see if we can make more. Miracles for MSA is spreading around the world. Regardless of which particular MSA charity you support or which MSA discussion board you participate in regularly, we are all in this together. Let’s get these miracles going!
http://www.facebook.com/Miracles-for-MSA
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 (PD+) 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.
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
Regards,
Pam
Moderator, “shydrager” Multiple System Atrophy Online Support Group
pbower@accesscable.net
http://groups.yahoo.com/group/shydrager