For those of you who follow me I thought maybe you would like to know a little bit about M.S.A. This illness is what my brother, Al has. It is not a fun disease, as most aren’t. This disease shortens the life by years and affects so much of the body.
I have spoken about it but it is a rare disease, so I thought I would share with you what I have learned.
Multiple system atrophy
Multiple system atrophy (MSA) is a rare condition that causes symptoms similar to Parkinson’s disease. However, patients with MSA have more widespread damage to the part of the nervous system that controls important functions such as heart rate, blood pressure, and sweating.
Causes
The cause is unknown. MSA develops gradually and is most often diagnosed in men older than 60.
Symptoms
MSA damages the nervous system. Symptoms can include:
- Face changes
- “Mask” appearance to face
- May be unable to close mouth
- Reduced ability to show facial expressions
- Staring
- Difficulty chewing or swallowing (occasionally)
- Disrupted sleep patterns (especially during rapid eye movement (REM) sleep late at night)
- Dizziness or fainting when standing up or after standing still
- Frequent falls
- Impotence
- Loss of control over bowels or bladder
- Loss of fine motor skills
- Difficulty eating
- Difficulty with any activity that requires small movements
- Writing that is small and hard to read
- Loss of sweating in any part of the body
- Mild decline in mental function
- Movement difficulties
- Muscle aches and pains (myalgia)
- Muscle rigidity
- Difficulty bending arms or legs
- Stiffness
- Nausea and problems with digestion
- Posture difficulties: may be unstable, stooped, or slumped over
- Slow movements
- Difficulty beginning to walk or starting any voluntary movement
- Freezing of movement when the movement is stopped, unable to start moving again
- Small steps followed by the need to run to keep balance
- Tremors
- May become severe enough to interfere with activities
- May be worse when tired, excited, or stressed
- May occur at rest or at any time
- May occur with any action, such as holding a cup or other eating utensils
- Finger-thumb rubbing (pill rolling tremor)
- Vision changes, decreased or blurred vision
- Voice and speech changes
- Difficulty speaking
- Monotone
- Slow speaking
- Voice is low volume
Other symptoms that may occur with this disease:
- Confusion
- Dementia
- Depression
- Sleep-related breathing difficulties, especially sleep apnea or a blockage in the air passage that leads to a harsh vibrating sound
Exams and Tests
Your doctor or nurse will examine you, and check your eyes, nerves, and muscles.
Your blood pressure will be taken while you are lying down and standing up.
There are no specific tests to confirm this disease. A neurologist can make the diagnosis based on:
- History of symptoms
- Physical examination results
- Ruling out other causes of symptoms
Testing to help confirm the diagnosis may include:
- MRI of head
- Plasma norepinephrine levels
- Urine examination for norepinephrine breakdown products (urine catecholamines)
Treatment
There is no cure for MSA. There is no known way to prevent the disease from getting worse. The goal of treatment is to control symptoms.
Anticholinergic medications may be used to reduce early or mild tremors. Levodopa may improve movement and balance.
Carbidopa is usually added to Levodopa to reduce its side effects and make it work better. However, for people with MSA the response to medications may be disappointing. Many people respond poorly to treatment with anticholinergics or Levodopa.
Medications that may be used to treat low blood pressure include:
- Beta-blockers
- Fludrocortisone (Florinef)
- MAO inhibitors
- Vasoconstrictors (midodrine)
- Vasopressin
A pacemaker that is programmed to stimulate the heart to beat at a rapid rate (faster than 100 beats per minute) may increase blood pressure for some people.
Constipation can be treated with a high-fiber diet and laxatives. Medicines are available to treat impotence.
Outlook (Prognosis)
The outcome is poor. Loss of mental and physical functions slowly get worse. Early death is likely. Patients typically live 7 to 9 years after diagnosis.
Possible Complications
- Progressive loss of ability to walk or care for self
- Difficulty performing daily activities
- Injuries from falls/fainting
- Side effects of medications
When to Contact a Medical Professional
Call your health care provider if you develop symptoms of this disorder.
Call your health care provider if you have been diagnosed with MSA and your symptoms return or get worse. Also call if new symptoms appear, including possible side effects of medications:
- Changes in alertness/behavior/mood
- Delusional behavior
- Dizziness
- Hallucinations
- Involuntary movements
- Loss of mental functioning
- Nausea/vomiting
- Severe confusion or disorientation
Most interesting, Terry, but horrifying to realize this is what you and Al are dealing with every day.
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yes it is a bad disease, and every day we deal with different parts of it. I just learned today that Al has been seeing through double vision. I also learned that this is part of the M.S.A.
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it is very horrible,nasty disease.my husband(his name Al too,Allan)got this disease,and we both going thru very hard ,most horrible time ,can put right words.I know Terry what you going thru ,god bless you and give you strength,sorry for spelling ,english not my first languge
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I understand you well enough, and I also understand your pain, fears, and hope. big hugs my friend
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just one year ago, I wrote a newspaper profile story on an incredible man who has MSA living in Fairport NY. Before I interviewed coach Brown, I also had no awareness of the disease, it is horrible and I am so sorry your brother Al. here is the link to my story on Coach Brown from last year: I hope that this is a comfort that though this is a rare disease, your brother is not alone in his suffering: http://wp.me/pXO6C-QQ
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thank you and bless you Stacy for being an angel when I needed one just now. I will always remember you
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Terry, I haven’t been writing or reading much in the past few months. I somehow missed that Al has M.S.A. rather than Parkinson’s. Well, I’ll say it: that sucks…..Chrystal
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yes it really does, and big time
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Thank you Terry for the information. I follow another blogger (busymindthinking) who just got a diagnosis for her mysterious medical symptoms that have her wheelchair bound. Thank you for taking care of Al. You are his Angel.
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thank you for being an angel to me Soulfood, God sends me angels when my hope is down so you can help me to stay strong. bless you
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❤ {{hugs}}
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It’s a terrible, wasting disease, and I so wished that it doesn’t exists. It’s sad to know Al is going through all of this and you have to watch. Take care my friend. xoxo
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thanks Angel. I hate watching it progress. It frustrates me
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What a list, this disease is not jus tone part of the body but all, how awful for Al, I can understand his frustration and his wish to go! And you watching it every day! Frustrating for you too! big hugs!
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it is very hard to watch him and even worse to watch him try to go back in time. He will deliberately let loose of what he is too hold on because he thinks he can walk or take too big of bites. I understand what he is thinking but it also forces me to stay on top of things much more closely
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Thank you, Terry, for this info. Quite saddening to see Al that way 😦
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for me it is too. It is a nasty disease
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😦
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Terry,
I haven’t been around much lately and I’m so surprised about the MSA. Didn’t Al originally have the diagnosis of Parkinson’s? What made them re-evaluate? Has it been a while or have I just missed it? Your post was quite an education; there is so much similarity between the two diseases. It seems the major difference is response to levadopa/carbadopa and speed of disease progression. Am I right? Either way, I’m so sorry for Al and for you but also touched by your devotion, inspired by your spirit and impressed by your strength. Prayers for you both.
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yes he was diagnosed in the beginning with PD. After years go by there are specific ways to tell the differences between the two, making it clearly one or the other. M.S.A. hits the spinal column affecting three major areas of the body. Ex. Al’s heart rate can beat 300 per minute, as that part of his body has been damaged controlling the heart. PD affects the brain only. Thank you for the prayers.
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Oh my dear friend what a horrible disease! Hugs and fond regards!!
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I wish things could be different, but God has his plan
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