camilla
thanks for the info on msa
i have had  useful responses from the list for the enquirer and will fax the
material to him
he has not yet responded to my first fax
judy


>From: Camilla Flintermann <[log in to unmask]>
>Reply-To: Parkinson's Information Exchange Network
><[log in to unmask]>
>To: [log in to unmask]
>Subject: Re: MSA info  (long)
>Date: Sat, 20 May 2000 22:11:28 -0400
>
> >i was reading a womans magazine lately and a man from south australia
>asked
> >for information on
> >multiple system atrophy
> >it was diagnosed firstly as parkinsons and he is asking for information
>for
> >himself and his wife who has the disease now correctly diagnosed
> >i think i saw a refernece to this some weeks ago but deleted as i wasnt
>of
> >interest to me
> >i have faxed him this website but would appreciat any help for him
> >________________________________________________________________________
> >Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com
>
>Judy--- Here's some info that may help him---
>
>You are invited to join the Multiple System Atrophy electronic mail
>discussion list.
>You'll find patients and caregivers sharing information on symptom
>management and coping strategies for dealing with the various forms of MSA
>which include Shy-Drager Syndrome (SDS), non-hereditary
>Olivopontocerebellar atrophy (OPCA) and Striatonigral Degeneration (SND).
>Anyone is welcome to join regardless of diagnosis.  This list is sponsored
>by David Robertson, GCRC at Vanderbilt University Medical Center.  The list
>manager is Sylvia Dickinson, RN.
>
>To subscribe to the list:
>
>Send an email to:
>
>[log in to unmask]
>
>and in the body of the message write
>
>subscribe Shy-Drager
>
>We hope that this list will serve as a forum to exchange information and
>support for those who are diagnosed with various forms of Multiple System
>Atrophy, their families and friends as well as anyone who has an interest
>in this disorder.  Please send a message to the list (if you want to)
>introducing yourself and any MSA related topic you would like to discuss.
>The introductory message as well as all other "public" messages should be
>sent to the following Internet address:
>
>[log in to unmask]
>
>Your message will be automatically sent to all subscribers. Conversely, you
>will receive all messages sent to the above address. If you want to REPLY
>*PUBLICLY* to the sender of a message, use the "REPLY" feature of your mail
>system. (In other words, the message will be returned to the list server
>and will be distributed in that way.) If you want to REPLY *PRIVATELY* to
>the sender of a message, you must "SEND" to that person's email address.
>
>To LEAVE the list at any time, address an email message to
>
>[log in to unmask]
>
>and in the body of the message write:
>
>unsubscribe Shy-Drager
>
>It is a good idea to leave the list if you are going to be away from your
>computer for a couple of months.
>
>To resubscribe, simply address mail to:
>
>[log in to unmask]
>
>and in the body of the message write
>
>subscribe Shy-Drager
>
>Please do not write subscribe and unsubscribe messages to the
>[log in to unmask] address. They will go out to everyone on
>the list.
>***********
>
>
>Parkinson's Report
>National Parkinson's Foundation, Inc.
>
>                      VOLUME XIX - ISSUE 2 / Spring 1998
>
>
>Multiple System Atrophy
>
>By members of the National Parkinson Foundation Center of Excellence at
>Vanderbilt University, including David A. Robertson, Director, Nathan S.
>Blaser
>Shy-Drager Research Laboratories; Thomas L. Davis, Director, Movement
>Disorder Clinic; and Ariel Y. Deutch, Director, NPF Center of Excellence
>
>Although the cause of idiopathic Parkinsonís disease is unknown,
>Parkinsonís
>disease is probably the best characterized of the neurodegenerative
>disorders. The
>loss of dopamine in the striatum is the major contributor to the disorder.
>However,
>there are several other neurodegenerative disorders involving several
>different
>systems in the brain, in which striatal dopamine loss is also found.
>
>Among these other neurodegenerative disorders is multiple system atrophy
>(MSA),
>in which degeneration in diverse brain regions leads to problems in the
>control of
>movement, balance, blood pressure, and sexual and urinary tract function.
>MSA is
>often accompanied by some striatal dopamine loss and in certain patients
>typical
>parkinsonian symptoms are either the first noted or the most prominent.
>
>A number of areas of the brain are involved by MSA. This has led to
>different
>varieties of MSA receiving different names, depending on which area of the
>brain
>has predominant involvement. When MSA begins with imbalance,
>incoordination,
>and difficulties in speaking (dysarthria), it is often called
>olivopontocerebellar
>atrophy; as the name suggests, this form of MSA is marked by degeneration
>in the
>cerebellum, a structure involved in balance and learned motor tasks. When a
>patient
>initially has rigidity (stiffness) and slowness in initiating movements
>(bradykinesia)
>that is out of proportion to tremor, this MSA form has been called
>striatonigral
>degeneration, involving communication between nerve cells in the striatum
>and
>midbrain. In patients in whom changes in autonomic function dominates the
>initial
>presentation, particularly changes in blood pressure regulation, the MSA
>form is
>often called Shy-Drager syndrome.
>
>Between 25,000 and 100,000 American have multiple system atrophy. However,
>many will not receive the correct diagnosis during their lifetime. This is
>due to the
>difficulty in differentiating MSA from other disorders (including
>relatively common
>degenerative disorders such as Parkinsonís disease and more rare ones such
>as pure
>autonomic failure). MSA usually occurs after age 50, with a slightly higher
>incidence in males. Patients usually have autonomic nervous system
>dysfunction
>first. Genitourinary dysfunction (difficulty with urination) is the most
>frequent initial
>complain in women, while impotence is the most frequent initial complaint
>in men.
>Orthostatic hypotension (a large drop in blood pressure upon standing) is
>common
>and may cause dizziness, dimming of vision, head or neck pain, yawning,
>temporary confusion, slurred speech, and if the hypotension is severe, the
>patient
>may "faint" upon arising from a recumbent position. In spite of low blood
>pressure
>while standing, it is common for MSA patients to have high blood pressure
>when
>lying down. A fall in blood pressure following meals or in hot weather or
>following
>infection is quite common.
>
>When MSA begins with non-autonomic features, imbalance is the most common
>feature. This difficulty in maintaining balance may be due to either
>cerebellar or
>Parkinsonian abnormalities. Some patients complain of stiffness,
>clumsiness, or a
>change in handwriting at the onset of MSA. The concurrent involvement in
>MSA of
>multiple brain systems subserving movement, including the striatum,
>cerebellum,
>and cortex, leads to the movement disorder as often being the most profound
>disability. Hoarseness or even vocal paralysis are relatively common, as
>are sleep
>disturbances, including snoring and sleep apnea. The ability to swallow
>foods and
>liquids may be impaired.
>
>The initial diagnosis of MSA is usually made by carefully interviewing the
>patient
>and performing a physical examination. However, more testing is often
>needed to
>confirm the diagnosis. Among the tests that are helpful in determining the
>presence
>of MSA are several types of brain imaging including computerized tomography
>(CT) scans, magnetic resonance imaging (MRI), and positron emission
>tomography
>(PET). Pharmacological challenge tests (administering certain drugs in the
>presence
>of various types of movements of the patient) may also be of help. In those
>patients
>with typical parkinsonian signs, an incomplete and relatively poor response
>to
>dopamine replacement therapy (such as l-dopa [Sinemet]) may be a clue that
>MSA
>is present.
>
>The characteristic involvement of multiple brain systems is a defining
>feature of
>MSA, and one that on autopsy confirms the diagnosis. Recently, several
>groups
>have reported the presence of unusual inclusions in certain types of brain
>cells.
>These glial cytoplasmic inclusions are, as the name indicates, typically
>found in glial
>cells, which are the structural and metabolic support elements of the brain
>but are
>not neurons (nerve cells). Glial cells are central to maintaining the
>correct balance of
>ions in the brain, without which neurons cannot survive. Moreover, glial
>cells
>express certain proteins that accumulate and thereby limit extracellular
>excitatory
>amino acids that can be toxic to neurons. These functions of glial cells,
>coupled
>with the presence of glial cytoplasmic inclusions in MSA but not
>Parkinsonís
>disease, have sparked considerable research interest. It is noteworthy that
>a
>different type of intracellular inclusion in nerve cells, the Lewy body, is
>present in
>Parkinsonís disease but not MSA.
>
>In MSA, there is loss of function in the two divisions of the peripheral
>nervous
>system: the sympathetic and parasympathetic nervous systems. Although the
>autonomic nerves themselves are largely intact, the brain loses its
>capacity to
>properly engage them to control the autonomic function. Consistent with the
>involvement of many brain regions in MSA, the concentrations of many
>neurotransmitters in the brain are reduced in MSA.
>
>As with Parkinsonís disease, the cause of MSA remains unknown. Antibodies
>in
>the spinal fluid of patients with MSA have been shown to react with a
>specific area
>in an experimental animal brain, raising the possibility that MSA may be
>related to
>an abnormality of the immune system. It is also possible that MSA is due to
>abnormal folding of some unknown protein. At this time, however, these
>observations require independent confirmation in large groups of patients,
>and the
>relationship of such changes to specific symptoms in MSA remains unclear.
>What is
>clear is that there is a compelling need for research into the causes, and
>hence
>treatment and cure, of MSA and Parkinsonís disease.
>
>MSA is a rare and sporadic disorder and available evidence does not support
>a
>hereditary component to the disorder. Among more than 400 patients
>evaluated at
>Vanderbilt University Medical Centerís Autonomic Dysfunction Center during
>the
>past 20 years, not one had a family member with MSA, although a number of
>them
>had family members with Parkinsonís or Alzheimerís disease. While it is
>possible
>that a few of these family members diagnosed with Parkinsonís or
>Alzheimerís
>disease might have actually had MSA, available data strongly suggests that
>MSA is
>not inherited. In Parkinsonís disease there is a similar but not identical
>situation,
>with hereditary forms of the disease representing only a small minority of
>the
>patients; even in these patients, the disease process differs somewhat from
>idiopathic Parkinsonís disease. There is no evidence that MSA is
>contagious; we
>have never observed people in the same house who developed the disease.
>
>Given the relative rareness of MSA and the frequent misdiagnosis of the
>disorder, it
>is not surprising that there is a paucity of careful epidemiological
>investigations of
>MSA that allow one to identify predisposing environmental factors. Although
>one
>report raised the possibility of a small effect of exposure to
>environmental toxins
>and another report suggested a slight correlation with prior head injury,
>these claims
>have not yet been supported by other studies. In particular, MSA does not
>appear
>to be related to or caused by prior alcohol or drug abuse, poor nutrition,
>or other
>disease process earlier in life.
>
>MSA may progress rapidly. Patients survive an average of nine years
>following
>onset of illness; some patients live as much as twice this long. Current
>treatment of
>MSA is symptomatic. The most valuable agents to increase blood pressure are
>fludrocortisone and midodrine. In addition, most patients with MSA derive
>some
>benefit from typical antiparkinsonian medications such as levodopa
>(Sinemet),
>dopaminergic agonists (pergolide and bromocriptine), and anticholinergic
>drugs.
>
>In summary, MSA is a severe neurodegenerative disorder of unknown cause.
>There
>is currently no cure for MSA, nor is there any therapy available that stops
>or slows
>the progression of the disease. At this time, treatment is aimed at
>treating problems
>as they arise, and thus requires careful monitoring of the patient by a
>skilled and
>experienced clinician with expertise in MSA.
>
>The lack of specific treatments to cure or slow the progression of MSA is
>disheartening to patients and their loved ones and caregivers. However,
>exensive
>research efforts aimed at advancing our understanding of MSA, Parkinsonís
>disease
>and other neurodegenerative disorders are in place, and we have enjoyed a
>period
>of very rapid advances in understanding of the pathophysiology of
>neurodegenerative disorders. We can expect such advances to culminate in a
>better
>understanding and treatment for MSA and Parkinsonís disease over the next
>decade.
>
>Multiple System Atrophy
>
>      Olivopontocerebellar Atrophy
>      Striatonigral Degeneration
>      Shy-Drager Syndrome
>
>Symptoms of MSA
>
>      difficulty with urination
>      impotence
>      orthostatic hypotension
>      gastric fullness
>      loss of sweating
>      frequent nighttime urination
>      imbalance
>      incoordination
>      hoarseness/snoring
>      muscle weakness
>Parkinsonís Disease vs. Multiple System Atrophy: Observations Suggestive of
>MSA
>      Poor response to Sinemet
>      Low blood pressure on standing
>      Difficulty with urination
>      Use of a wheelchair
>      Loud snoring or loud breathing
>      Frequent nighttime urination
>Treatment of MSA
>      Fludrocortisone (blood pressure)
>      Midodrine (blood pressure)
>      Sinemet (movement disorder)
>      Dopaminergic Agonists (movement disorder)
>      Anticholinergics (movement disorder)
>      Erythropoietin (anemia)
>
>
>Camilla Flintermann, CG for Peter 82/70/55
>Oxford, Ohio
>http://www.newcountry.nu/pd/members/camilla/one.htm
><[log in to unmask]>
>
>            also, on PDWebring at
>http://members.tripod.lycos.nl/genugten/flinterm.htm
>
>                         "Ask me about the CARE list for
>                         Caregivers of Parkinsonians ! "
>            And visit the CARE webring at
>http://www.crosswinds.net/~caregivers/index.html
>

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