Gary Rose is 60 years old. He was diagnosed with multiple system atrophy (MSA) about 3.5 years ago. Symptoms began over 7 years ago. He lives in Washington state. He is the facilitator of the monthly national support group “meeting” (online meeting or conference call) for those with MSA.
In honor of March being MSA Awareness Month, he wrote this article for the CurePSP (psp.org) March/April 2012 newsletter. Amazingly for me, I can’t find anything in the article that I disagree with or think is inaccurate. It’s the best lay article I’ve read on MSA!
Gary’s article is copied below.
I am very impressed that Gary referred to the “Clinical Outcomes” research article. The article examines the clinical records of 83 people with autopsy-confirmed MSA. It’s the best source of information on “survival time” and “diagnostic accuracy” in MSA.
You can read my notes on the “Clinical Outcomes” paper here:
www.brainsupportnetwork.org/
Good job, Gary!
Robin
————————–
www.psp.org/file_download/
Multiple System Atrophy: An Introduction
by Gary L. Rose
CurePSP Newsletter
March/April 2012, Issue 8
March is Multiple System Atrophy (MSA) Awareness month, so I am happy to introduce you to MSA. This article is a primer and will not delve too deeply into MSA.
I am a 60 year old man with MSA. I’d like to share the story of my diagnosis. I first went to the local urgency care clinic with symptoms more than seven years ago. I had been waterskiing with my adult daughter. I got up, but the water ski just didn’t feel right – it felt ‘slippery’. At the time, I was aware that I had a balance problem, but figured it was temporary – perhaps it was an ear infection. Of course, it turned out to not be an ear infection at all. I saw many healthcare professionals (including three neurologists) until my diagnosis, about three and a half years later. It is common for people with MSA to go years with no diagnosis, or to be misdiagnosed. Upon diagnosis with MSA, it is common for people with MSA or their loved ones to think further back and find MSA symptoms long before the diagnosis – that also was true for me. I remembered having problems roller skating. I had blamed it on the new skates. I sold the skates and stopped skating! Now I realize my balance had been off and that it was due to MSA.
MSA is a progressive brain disorder caused by loss of nerve cells in specific areas of the brain. The areas of the brain affected are the basal ganglia, the brain stem, or the cerebellum. Depending on the area of the brain most affected, symptoms can be stiffness, slowness and freezing (typical Parkinson’s Disease symptoms when the basal ganglia is affected); autonomic features like bladder control, low blood pressure, constipation, erectile dysfunction, body temperature regulation and loss of ability to sweat (symptoms when the brain stem is affected); and balance, coordination, and impaired speech (symptoms when the cerebellum is affected). There are two types of MSA: MSA-P, the parkinsonian type, and MSA-C, the cerebellar type. All people with MSA are thought to develop autonomic features, at some time.
The technical definition of MSA, according to Parkinson Society Canada:
“MSA was previously known as Shy-Drager syndrome, striatonigal degeneration and sporadic olivopontocerebellar atrophy. Researchers have learned that there is a common underlying cause in all three disorders, so they are now referred to as MSA. In MSA, brain cells in the affected areas shrink (atrophy). This can sometimes be seen on MRI scans. When brain tissue is examined under a microscope, structures called glial inclusion bodies can be seen; they contain a protein called alpha-synuclein. It is the presence of these inclusion bodies in the movement, balance and autonomic control centers of the brain that confirms a diagnosis of MSA.”
MSA is thought to be sporadic – that is non-hereditary. It is considered rare – about 4 or 5 people in 100,000 have it. MSA is rarer than progressive supranuclear palsy (PSP). MSA is slightly more common in men than women, but it is almost 50/50. It usually starts in a person’s 50s, although it can affect people younger and older than this. The cause of MSA is unknown. Some researchers believe that certain people can be genetically predisposed to the disease, even though a trigger still has to occur. The trigger is unknown, but suspected by some researchers to be an environmental factor of some kind. Environmental toxins and brain trauma as potential triggers are currently being researched.
MSA manifests itself differently in every individual – the speed of progression and types of symptoms vary from person to person. MSA is a progressive brain disease, but that is about all that can be said about it. Symptoms will change over time, and decline happens more rapidly than in Parkinson’s Disease.
Currently, there is no treatment to slow the progression of MSA. Each of the many symptoms of MSA should be treated by a neurologist (ideally, a movement disorder specialist), general (family) doctor, urologist, clinical nurse or physician’s assistant, speech-language pathologist, physical therapist, or occupational therapist.
After diagnosis, some patients have difficulty in finding out what the future holds. Often, the patient (or a loved one) discovers that MSA is terminal by searching the internet. Then the question becomes, “how long do I have?” Because MSA is highly individualized, it is dangerous to base one’s future (and expectations of MSA) on the anecdotal experiences of others. Unique experiences are just that – unique. For this reason, articles like “Clinical Outcomes of Progressive Supranuclear Palsy and Multiple System Atrophy can be much more helpful.” This particular study is based on a large number of MSA cases (83) and diagnoses that were pathologically confirmed. The study found that 7.9 years, plus or minus 2.8 years, is the average time of disease duration.
For more information on MSA, see these organizations/websites:
• The National Institute of Neurological Disorders and Stroke at the NIH:
www.ninds.nih.gov
• The Shy-Drager/Multiple System Atrophy Support Group, Inc.:
www.shy-drager.org
• The MSA Trust: www.msatrust.org.uk
Further reading:
• Second Consensus Statement on the Diagnosis of MSA:
www.ncbi.nlm.nih.gov/pmc/
• Clinical Outcomes of PSP and MSA:
www.brain.oxfordjournals.org/