asmsfaq

Hello!!!

Welcome to the English Version of the ASMS FAQ.

For the Spanish Version of the ASMS FAQ please see the following:

Bienvenidos a ASMS, grupo de apoyo para los afectados de esclerosis multiple o interesados en la enfermedad. Pagina de Lluis Compte:

http://usuarios.lycos.es/lluiscompte/esclerosi/asms.htm

All information in this ASMS FAQ* is a combination of information provided by the members of the ALT.SUPPORT.MULT-SCLEROSIS USENET GROUP otherwise known as ASMS

The FAQ also contains Nettiquette (suggestions for posting) information, links to helpful technical sites for newer users.

I hope you enjoy your visit!

Julie D

This page is maintained by Julie D AKA Jdgargoyle AKA PoisonIvy Please feel free to contact me at [email protected] if you have any questions or additions for this FAQ. It is a always a "work in progress" and contributions are always welcome. Thanks for reading and we hope it is helpful to you.

"Believe nothing, no matter where you read it. or who said it, no matter if I have said it, unless it agrees with your own reason and your own common sense.." - Buddha

Index

What is Multiple Sclerosis?

Accepted Categories of Multiple Sclerosis

Common Symptoms of Multiple Sclerosis

Current Approved Treatments to slow progression

Posting Etiquette

Helpful Links

What is Multiple Sclerosis?

Multiple Sclerosis (MS) is an inflammatory disease of the Central Nervous System (CNS) - that's the brain and spinal cord. Predominantly, it is a disease of the connective "white matter" tissue. The white matter is made up of nerve fibers. Nerve fibers are responsible for transmitting communication signals both internally within the CNS and between the CNS and the nerves supplying rest of the body.

In people affected by MS, patches of damage called plaques or lesions appear in seemingly random areas of the CNS white matter. At the site of a lesion, a nerve insulating material, called myelin, is lost. Clinically, MS is a hard condition to characterize because it is very unpredictable and variable. Depending on which areas of the CNS are affected and how badly they are damaged, the type and severity of symptoms can vary greatly.

No two people get MS in exactly the same way and the expression of each individual's disease is as unique as their fingerprints. However, the different courses of the disease, both within an individual and within the whole population, principally differ in their timing, location and severity. Underneath similar processes (including demyelination and other forms of nerve degeneration) are going on.

Although recent research indicates that the biochemical make-up of lesions may vary between different forms of the disease, this is not the reason why people with MS (PwMS) have such widely differing symptoms - it's because nerve damage to one site usually causes completely different symptoms to damage to another.

In general, people with MS can experience partial or complete loss of any function that is controlled by, or passes through, the brain or spinal cord.

Copied from Paul Jones's Site, a member of ASMS located at
http://www.mult-sclerosis.org/whatisms.html

Accepted Categories of MS These categories change frequently as Medical Research moves forward.

Please understand that no two people get MS in exactly the same way and the expression of each individual's disease is as unique as their fingerprints. The following are the current categories of the disease. Not all people with MS fit into these categories. These are general definitions only.

MS is not a disease that every person afflicted with MS fits into these categories neatly. It varies from person to person, which is possibly the main cause of not finding a cure. Is it viral? Genetic? Bacterial? A combination of all three? Is it a lack of a certain vitamin?

Throughout the years there have been many theories as to the cause, however a cure or cause has not been found currently.

Relapsing Remitting/ Recessive Remissive Multiple Sclerosis or RRMS*

One feels sick and has one or more symptoms during a relapse. Sometimes these symptoms seem relatively minor (if one is diagnosed) and sometimes they are overwhelming. Between the relapses are stretches of time of varying lengths where one feels well even though one may have some residual disability from prior relapses.

Usually one never knows when a relapse will come or what will activate the disease process. A relapse can totally remit or there can be some residual symptoms that do not change until there is another relapse.

Secondary Progressive or SPMS*

Secondary progressive multiple sclerosis is another form of relapsing -remitting disease. This begins as relapsing-remitting MS but changes so that there is also constant progression. There is a slow or quick downhill slide resulting in increased loss of function.
At the same time, it is possible for remissions to occur. A remission improves the symptoms of the relapse but often there is no true recovery of the prior state of health. These symptoms usually slowly continue to deteriorate physical and/or cognitive function.

Primary Progressive Multiple Sclerosis or PPMS*

Primary progressive disease is a slow or more rapid deterioration of physical and/or cognitive function without evidence of any relapse. There is a loss of function from the beginning and that continues at differing rates in different people.

There are sometimes plateaus in both of the progressive forms of the disease. These plateaus can vary in time. There usually is little or no improvement of symptoms in Primary Progressive or Secondary Progressive.

However, through a healthy diet and exercise, such as swimming, yoga, and other types of less physical exercise, progression has been known to be slowed or in the rarest of cases possibly stopped progression.

Benign MS

Benign MS forms a subset of Relapsing-Remitting MS as defined by Lubin and Reingold and is generally not considered to be one of the major forms of MS, it's just a milder presentation. In any event, it takes 10-15 years to diagnose benign MS (depending on which school your neuro belongs to) - part of the definition of benign is that 10-15 years have elapsed without significant enduring disability.

Plenty of people with benign MS go on to develop Secondary-Progressive MS. "... the label "benign multiple sclerosis" is often temporary as apparently benign disease often becomes disabling" (Hawkins and McDonnell, J
Neurol Nuerosurgery Psychiatry, 1999).

Progressive Relapsing Multiple Sclerosis (PRMS)*

*PRMS is one of the four principle forms of MS - RRMS, SPMS, PPMS and PRMS - as defined by Lubin and Reingold, Neurology, 1996. Recently a few neurologists have hypothesized that PRMS is really a variant of Primary-Progressive but this is not official doctrine.

Malignant MS

Also known as Marburg's Variant and Acute Multiple Sclerosis. This is a label given to forms of MS where the disease progresses very rapidly from onset leading to severe disability within a relatively short period of time. Fortunately, this form of MS is extremely rare

Transitional/ Progressive MS

This form of MS follows a progressive course from onset, punctuated by relapses. There is significant recovery immediately following a relapse but between relapses there is a gradual worsening of symptoms.

Chronic Progressive MS

Primary Progressive and Secondary Progressive used to be lumped together as Chronic Progressive (CPMS) but this term is no longer officially recognized although you will still see it referred to now and then.

Devic's Disease

Also known as Neuromyelitis Optica, Devic's disease is a related condition to multiple sclerosis that is characterized by an attack of Optic Neuritis in both eyes followed by severe inflammation of the spinal cord. (Transverse Myelopathy).

Balo's concentric sclerosis

This is another very rare disease that resembles multiple sclerosis. Clinically, it is very hard to distinguish Balo's concentric sclerosis from MS but MRI scans show the lesions in Balo's to be concentric rings of intact myelin and demyelinated zones. It is more common in China and the Philippines than elsewhere

*Indicates the current 4 major categories currently in use as defined by Lubin and Reingold, Neurology, 1996.

Medications should be discussed with a neurologist who is an expert in the field of multiple sclerosis. Not all neurologists are familiar with MS. Contacting your local MS Society can help with location of an MS knowledgeable neurologist in your area.

The person who is diagnosed with multiple sclerosis needs to become as educated as possible about the disease because it is usually the person with MS who makes the medical decisions with the counsel of the physician.

Note: Be aware that there is disability caused by the disease itself and disability due to noncompliance with treatment or complete inactivity. Physical, occupational therapy and a healthy diet can often help with strength and movement even in the most severe cases of the disease.

Common Symptoms of Multiple Sclerosis (MS)

Please understand that this is not a complete list of symptoms. Every person with Multiple Sclerosis (MS) has a different combination of symptoms. Occasionally, one will have symptoms seldom seen. This list contains the most *common* ones. None of the symptoms alone are usually MS.

Optic neuritis

Vision problems that include cloudy vision, loss of central or peripheral vision, pain on movement of the affected eye and blindness (usually in one eye only)

Headache

This headache is usually experienced in the form of a migraine.

Tinnitis

ringing ears

Weakness

Can be generalized but usually confined to one or two limbs.

Pain

Pain can be anywhere but is usually migratory. Can range from a minor nuisance, to total immobilizing, debilitating pain.

Paresthesias

Usually numbness and/or tingling ? this can occur anywhere but usually occurs in the arms and legs.

Itching

Everyone itches now and then but scratching will usually relieve normal itching. In a person with MS the itching may be intense and when scratching the itch, the surface skin may be numb to the touch and the itch much deeper making it impossible to reach.

MS Hug

Tightness (sometimes painful) from near the spine to the sternum - can be bilateral.

L'hermitte's Sign

Pins and needles going down the back (and sometimes into the limbs) when the chin is touched to the chest

Trigeminal Neuralgia

This symptom ranges from irritating numbness and tingling along a facial nerve path to intolerable pain - MS is the only disease where this can be bilateral.

Restless leg syndrome

This symptom is much like it sounds, the inability to hold still for long, often most noticeable at bedtime.

Tremor

There are usually two types - one is a constant fine tremor of one or more limbs or the head - one is gross tremor when trying to purposely use a limb.

Disrupted sleep pattern

Many of these symptoms listed above can be cause this.

Bladder problems

This can include but is not limited to urinary retention, frequent bladder infections or incontinence. An urologist should be contacted for treatment of any of the above listed or unlisted bladder problems.

Bowel Problems

This can be but is not limited to constipation, loose stool or loss of control.

Paralysis

This can range anywhere from being unable to use a finger or two to quadriplegia.

Cognitive Problems

Cognitive problems due to MS, like all damage caused by MS, can range from the inability to speak to an increase in forgetfulness, loss of a word in mid conversation, loss of math skills, tripping over one's tongue, or inability to learn new functions. A psychologist, preferably one familiar with MS, such as a nuero psychologist, can evaluate this symptom through extensive testing.

Dementia

This is rare but still occasionally seen in advanced MS.

Gait problems

This can range from a widening of the gap between the feet to maintain balance, tripping over one's own feet often, limping, walking distance decreases, wall walking, weakness, unable to partially or totally support weight - low back pain from walking or standing for a relatively short period of time. Wall walking is walking close to the wall or touching the wall to maintain balance.

Depression

This is not uncommon, particularly when first diagnosed and the family is adjusting to having MS - can also occur because of the placement of the lesions and is difficult to tell the difference. Serotonin levels can fluctuate making the
depression clinical. Depression is treatable and should be discussed with your doctor.

Lability

This is connected with clinical depression. It includes inappropriate emotional reactions to situations - laughing or crying most noticeable.

Muscle Spasm

This is described as almost like a *charley horse* but involves the entire muscle or group of muscles. Spasms can vary from feeling tight to painful. In some cases the afflicted person can usually feel where the muscle attaches to the ligaments or tendons on each end.

Fatigue

This is a special type of fatigue that may build up or may suddenly appear. One feels like one MUST rest. This type of fatigue is much more than feeling tired or sleepy.

***There are many other more obscure symptoms not listed here.

Current Common Approved Treatments to slow progression

Avonex*

Betaseron**

Copaxone

Rebif*

Novantrone

*Avonex and Rebif are beta interferon 1a.

**Betaseron is beta interferon 1b.

The interferons are the same as the body's natural beta interferons. Each is made a slightly different way and the method of injection is a little different in each of them.

Copaxone is a man made drug. It is also injectable. A "decoy" for the overactive immune system to attack instead of natural myelin.

Novantrone is a chemotherapy drug recently approved in the United States and available elsewhere in the world for slowing the progression of Progressive MS.

These drugs are not cures! Each of them is effective in approximately 1/3 of the MS population. They are meant to slow down the number of relapses per year, decrease the severity of the relapses and therefore the amount of residual disability.

Some of the drugs are available in one country and not another. This depends on the government style approval process in each area and on the type of medical insurance system the person with MS has. Discuss the options with your physician. Study the information the physician can give you and reputable web sites. Depending on your location, other treatments may be available by discussing the subhect with your physician.

Always make informed decisions.

Check any information with another type of source. For instance, if you read something in a book, check with reputable Internet sites and ALWAYS your physician.

Posting Etiquette

There are a few simple guidelines, when followed make for pleasant discussion and eliminate dissention within the group. Symbols are used to indicate what kind of reply or post you are making. This list will be updated pending feedback from any and all members of the ASMS news group.

Overly offensive language is just that. Offensive. Enough said.

: ) before a post stands for a humorous reply or a joke

OT: a discussion OR reply off topic of the current thread - anything goes

Posts should be made in plain text only. Many newsreaders cannot read HTML postings.

Please remember this is a free forum and unmoderated. Following the above guidelines helps members weed through the posts. They are suggestions only.

***********WARNING***********

Trolls are individuals that appear in ASMS from time to time spouting unfounded medical information, or just like to incite dissention. We also have experienced people with Munchausers syndrome, people that gain satisfaction from pretending they are really afflicted with MS. Sales people and pornography posts are common and impossible to control in an unmoderated forum. Please use your best judgement and always research and CHECK WITH A PHYSICIAN before beginning any online recommended treatment.

Helpful Links

A great site for explaining all the strange net speak and symbols like ROFLMAO, is www.netlingo.com

;For a great overview of how a PC works please see http://www.pcguide.com/

Online Yoga is available at http://www.mydailyyoga.com/

For more in depth information on any of MS topics within this FAQ, please see http://www.mult-sclerosis.org/ The website is run by a member of ASMS named Paul Jones. All medical articles posted by Cowboy and a other members of ASMS are archived here. Links to other ASMS sites, ASMS stories, web pages, a wealth of information!

Enjoy your stay with the members of ASMS. A wealth of information is available to you through posting a simple question. Many of the members have been a part of this Usenet group for years. Introduce yourself, enjoy yourself and Welcome!!!!

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