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 > ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com