understanding multiple system atrophy
Last updated March 2016.
Multiple system atrophy (or MSA), is a rare, progressive neurologic disease, similar to Parkinson's in that it causes tremor (or shaking of the hands) and changes in walking and speech. A protein called alpha-synuclein also builds up in the brains of both MSA and Parkinson's patients.
But MSA is different in where those proteins accumulate, and in the fact that it is progressive and always deadly. And MSA can also affect the cerebellum (which Parkinson’s does not), and this is the part of your brain that controls balance and coordination. A third feature of MSA is what is called "autonomic" failure, which is basically failure of the automatic parts of the nervous system: blood pressure control, breathing, urinary control, and so on.
The cause of MSA remains unknown, though theories abound. None have yet been fully accepted as truth. As a result, there is no cure. It affects 5 out of 100,000 people in the world, and only about 50,000 people in the United States. Read my first blog post for more info.
news about MSA
Robin Williams’s wife supports the theory that the actor died from a disease closely related to MSA called Lewy Body Dementia. His autopsy showed Lewy Bodies, which are clusters of alpha synclein, scattered throughout his brain. These bodies are also present in Parkinson's but are generally more restricted in their location.
Source: gettyimages
Kerry Simon, Rock & Roll chef, died with MSA on September 11, 2015.
Read his obituary, written by Robin Leach (from Lifestyles of the Rich and Famous)
Alice Cooper talks to Rolling Stone Magazine about losing his friend.
possible causes of MSA
Theories include that it is caused by a prion
NPR podcast and transcript, August 2015. The speakers discuss how if MSA is caused by a prion, Parkinson's and Alzheimer's might be too.
NBC News explores some of the possible implications of the study.
organizations supporting patients and families with MSA
Multiple System Atrophy Coalition (American-based) has a good description of MSA, and raises money to fund research on the disease.
Multiple System Atrophy Trust (UK-based), very user-friendly, advocating for MSA research and support.
MSA in the medical literature
““To have an article on Multiple System Atrophy appear in the most widely read medical journal in the world is a culmination of many years of hard work... to bring awareness to this disease that has no treatment and is always fatal...
The level exposure for this rare disease among the medical community is unprecedented.””
The New England Journal of Medicine published a review article about MSA in January of this year (2015), written by the world expert on MSA, Dr. Gregor Wenning, from Medical University Innsbruck, Austria.
Read the original article about MSA being caused by a prion, presented at the National Academy of Sciences in August 2015. vFirst author is Dr. Stanley B. Prusiner, who won the Nobel Prize for discovering prions in 1997.
Here's a nice summary of MSA for primary care providers. Note this is a British source, so it refers to GPs.
show your support!
October 3 is MSA Day!
March is MSA Awareness Month
Host the MSA Shoe! The MSA Shoe is a charitable organization that features an actual shoe that has traveled the world to raise awareness and money for MSA. Carrot Top has met the MSA Shoe, maybe you should too.