There is an online support group “mailing list” for MSA at http://groups.yahoo.com/group/shydrager (http://groups NULL.yahoo NULL.com/group/shydrager). Although it is called Shy-Drager, it is in fact an MSA chat group. It has over 800 members from all over the world, but mostly in America. The members are people with MSA, Carers of people with MSA and former Carers. A lot of the information is general discussion about this, that and everything, but the knowledge level of some of the members is better than many doctors, and much of the advice that they give is very worthwhile. I feel that many doctors could learn from reading the key information posted at this site. Joining the group is self explanatory, but if you have any problems, I am sure that the moderator, Pam Bower (pbower null@null accesscable NULL.net), will be more than happy to assist. Just click on Pam’s name to open an email.
You can join the group online and read messages there or subscribe and receive daily emails by sending a blank email to join shydrager (shydrager-subscribe null@null yahoogroups NULL.com). There is an MSA Chat Room located there also: www.accesswave.ca/~pbower/msachat.htm (http://www NULL.accesswave NULL.ca/~pbower/msachat NULL.htm)
The current chat schedule is posted. In order to join the chat you will need to have Instant Messenger running. Instructions can be found on the Chat Room web page.
There is also an MSA newsletter available online at:http://groups.yahoo.com/group/msa-news (http://groups NULL.yahoo NULL.com/group/msa-news). (Usually updated monthly). You can subscribe online to have it delivered to your inboxor send a blank email to subscribe to msa news (msa-news-subscribe null@null yahoogroups NULL.com) .
A.R.A.M.I.S.E – Association for Research on MSA Information – Support in Europe. This is a European web site in French moderated by Alberte Bonnet and Jean-Claude Michel. The site is at http://ams.aramise.free.fr (http://ams NULL.aramise NULL.free NULL.fr/). To read this web site in English, go to http://world.altavista.com (http://world NULL.altavista NULL.com/) and copy and paste http://ams.aramise.free.fr (http://ams NULL.aramise NULL.free NULL.fr/) into the box beside “Translate a Web page” and select “Translate from French to English”.
The Sarah Matheson Trust for Multiple System Atrophy in the UK http://www.msaweb.co.uk/newsletter.htm (http://www NULL.msaweb NULL.co NULL.uk/newsletter NULL.htm)
www.msaweb.co.uk/msaguide.htm (http://www NULL.msaweb NULL.co NULL.uk/msaguide NULL.htm)
www.msaweb.co.uk/faq.htm (http://www NULL.msaweb NULL.co NULL.uk/faq NULL.htm)
The Sarah Matheson Trust also has a newsletter which is posted at: www.msaweb.co.uk/newsletter.htm (http://www NULL.msaweb NULL.co NULL.uk/newsletter NULL.htm). (Usually updated quarterly)
There is an SDS/MSA Support Group in America at www.shy-drager.org (http://www NULL.shy-drager NULL.org/)which is very pro-active. It is a Non Profit corporation devoted to reaching and assisting the patients, caregivers, family Members and physicians who are dealing with Shy-Drager Syndrome (one of the three forms of MSA). Their mission is to educate and support those people by establishing a never-ending circle of information among all involved. This has become known as the “Circle of Hope”! They can be contacted at the toll free number in the USA 866-737-5999 or via e-mail to Vera James (vjames null@null shy-drager NULL.org). (Don NULL.Summers null@null shy-drager NULL.com). Just click on Vera’s name to open an email. Note that a list of US local area support groups for MSA can be found at this site.
Another good site to access is WE MOVE (Worldwide Education and Awareness for Movement Disorders) at www.wemove.org (http://www NULL.wemove NULL.org/). Click on MSA in the left column and you get a nice précis of MSA. (or go straight there by typing in www.wemove.org/msa/ (http://www NULL.wemove NULL.org/msa NULL.html) . WE MOVE offers a free information service and anyone can subscribe.
There is a good definition of MSA at the National Parkinson Foundation Inc web site. You can access this at www.parkinson.org/atrophy.htm (http://www NULL.parkinson NULL.org/atrophy NULL.htm).
For those wanting information on the various drugs used to treat MSA, The P-I-E-N-O Parkinsn’s List Drug Database Index can be found at www.parkinsons-information-exchange-network-online.com/drugdb/drugdb.html (http://www NULL.parkinsons-information-exchange-network-online NULL.com/drugdb/drugdb NULL.html)
Some other sites with information on MSA:
The National Ataxia Foundation in the US (They recognize MSA as a form of sporadic ataxia) http://www.ataxia.org (http://www NULL.ataxia NULL.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 (http://www NULL.ndrf NULL.org)
http://groups.yahoo.com/links/shydrager (http://groups NULL.yahoo NULL.com/links/shydrager)
www.neurologychannel.com/msa (http://www NULL.neurologychannel NULL.com/msa)
www.med.umich.edu/neurology/ (http://www NULL.med NULL.umich NULL.edu/neurology/)
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) and the European Multiple System Atrophy Study Group (EMSA-SG) see www.emsa-sg.org (http://www NULL.emsa-sg NULL.org)Current research articles on MSA can be found by searching Pubmed at:www.ncbi.nlm.nih.gov/entrez (http://www NULL.ncbi NULL.nlm NULL.nih NULL.gov/entrez) (http://www NULL.ncbi NULL.nlm NULL.nih NULL.gov/entrez)Clinical trials accepting MSA patients can be found by searching: www.clinicaltrials.gov (http://www NULL.clinicaltrials NULL.gov)
SIMILAR DISORDERS:
Various Parkinson Disease Societies and Foundations worldwide recognize MSA as a “Parkinson-Plus” Disorder. Many people with MSA are first diagnosed with Parkinson’s 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.