Multiple Sclerosis (MS) - Resources for Living with MS and Staying Well

My journey with Multiple Sclerosis

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I was a young 18 year old soldier in the US Army in 1983 when I can recall my first symptoms of Multiple Sclerosis (MS). What began to grip me were nebulous symptoms such as extreme fatigue, muscle spasms and vertigo. With no rhyme or reason, symptoms seemed to come and go. Nearly 20 years later in 2002, my neurologist and I would chase down a myriad of symptoms such as loss of vision, carpal-tunnel-like syndrome and frequent urinary tract infections to arrive upon a diagnosis of MS. The journey was long and frustrating, but like many MS'ers I felt a huge sense of relief to finally have a name to the MonSter that was invading my body and mind.

For many MS'ers the road to diagnosis is long and arduous. An MS'er may feel or be told that they are going crazy or that it is "all in their head". It takes a special kind of doctor and a special kind of knowledge to put the pieces of the MS puzzle together and solve it. I have had the blessing of having had a patient and persevering neurologist who has been able to work with me through all the uncertainty.

Currently I am retired from an IT job with a large research and development company. I had the fortune of signing up for and paying into Long-Term Disability Insurance (LTDI) while employed and never imagined in my lifetime that I would need to avail of it. I also have the grace of being a US Veteran and in 2005, the Department of Veterans Affairs ruled that my diagnosis of MS was "service-connected". I am currently rated as permanent and total at 100%. It seems that this disease called multiple sclerosis loves to seek out those of us who are type "A " and try to take a hold. I have not let MS take it's hold and continue to fight with that same heart that took me through military police school and kept me moving forward in the Army, the convent as a nun, through graduate school and throughout life. I will not sit down without a good, hard fight!

I wanted to develop this lens to bring together resources and pages and touch upon the human side of MS. Behind the name of this disease are living, breathing and vital people.

My prayers & wishes go to all MS'ers & caregivers, - Diana "Gkygrl"

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A Down & Dirty MS Definition for the Non-MS-er

Firstly, thanks for reading this far. I hope that this lens can bring a new awareness for you regarding MS. Invariably you know or will know someone with Multiple Sclerosis. If you don't know what the disease is - maybe you've heard of MS - you might immediately think of Jerry Lewis, his telethon and Jerry's Kid's. I can assure you right off, MS is not the same disease. Muscular Dystrophy is an entirely different beast. The lovely disease we are discussing here is MS or multiple sclerosis.

A super-dirty, non-scientific definition:

MS is a disease, or possibly multiple diseases, that causes your body to manufacture T-cells that attack the myelin sheath of nerves at random points. Myelin is a fatty substance that your body manufactures to insulate your nerves...a break in the sheath and the impulses don't get through. After each attack, the body patches the sheath, but the repair is "coarser" and thicker and is called a sclerosis (think scar). More attacks and you get "multiple" sclerosis (or scars). This stuff doesn't work as well as the original myelin and is prone to cause disruption in the electrical flow of things; or even total breakdown if the sclerosis gets too thick (which is caused by many attacks at the same point).

Diagnostic Criteria for MS

Exactly how is MS diagnosed?

Those of us who have MS know just how frustrating the process of diagnosis can be. Those who are in MS diagnostic limbo (affectionately called "Limbo-landers" in the MS-community) know equally as well how painful the process can be. For many of us, the diagnosis involves putting many pieces of a puzzle together in order to arrive upon a diagnosis of MS. Some people present with a very clear diagnostic picture and with others, the disease can masquerade many different things for years.

There are no laboratory tests, symptoms, or physical findings that can, by themselves, determine if a person has multiple sclerosis. Furthermore, there are many symptoms of MS that can also be caused by other diseases. Therefore, the MS diagnosis can only be made by carefully ruling out all other possibilities.

The long-established criteria for diagnosing MS are:

There must be objective evidence of two attacks (i.e. two episodes of demyelination in the central nervous system). An attack, also known as an exacerbation, flare, or relapse, is defined clinically as the sudden appearance or worsening of an MS symptom or symptoms, which lasts at least 24 hours. The objective evidence comes from findings on the neurologic exam and additional tests.

The two attacks must be separated in time (by at least one month) and space (indicated by evidence of inflammation and/or damage in different areas of the central nervous system).

There must be no other explanation for these attacks or the symptoms the person is experiencing.

Since 2001, the McDonald Criteria for Diagnosis of MS have been used worldwide.

Please visit here for a detailed chart on the McDonald Criteria

What type of MS do you have?

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Different "types" of Multiple Sclerosis defined

Taken from: http://www.wisegeek.com

Relapsing/remitting multiple sclerosis is defined by the patient having relapses or episodes of the disease. Slightly over 80% of those suffering from MS begin with this type. During a relapse, patients may experience symptoms not shown before, and may also see other symptoms experienced before either worsen, change or not be present. During the remission phase, the symptoms lessen, and the effects caused by symptoms such as disabling of the limbs may also lessen or may completely disappear. Periods of remission greatly vary. Some will experience only a few days of remission, while others may experience months or years of remission.

Secondary progressive multiple sclerosis is usually a second stage of relapsing/remitting MS. About 90% of those with relapsing/remitting MS will progress to this type. Remissions are characterized by worsening of the disease, so that relapses become more severe. Generally, after a while there are very few relapses while the MS simply worsens until the central nervous system is completely impacted. This process, however, can take many years, and many with this form of multiple sclerosis can still live fairly normal and active lives because the progression is not sudden.

Progressive relapsing multiple sclerosis is characterized by acute attacks, with little recovery during few relapses. Meanwhile, the relapses do not represent the recovery of the CNS, but simply a break prior to more significant attacks. Roughly 5% of those with MS have this type.

Primary progressive multiple sclerosis occurs in about 10% of those with MS. The body becomes gradually disabled, but the person tends not to suffer from acute attacks. This type of multiple sclerosis may be more difficult to diagnose because there are no attacks to herald the disease. However, gradual impairment of movement, and increased disability usually helps diagnose the disease within a few years of development.

Subtypes of multiple sclerosis come down to fine details. One subtype called Devic's Disease attacks the spinal column and particularly the eyes.

Benign MS is a subtype of relapse/remission. Usually a person has a single attack, and then the disease goes into remission for an extended period of time. Malignant or Marburg's Variant which is very rare progresses at a fast rate.

Getting a Diagnosis of MS ...

Getting a diagnosis of MS can be difficult. But you need to know that knowledge is power and now is your chance to learn. Get your head out of the sand and hold it up high. Life is not ending, it is beginning anew. Live life the best way you know how and don't be afraid to continue loving and being loved.

Life will go on.

- Diana d.

"We Have MS" Networking Community

I had originally created an MS Networking website but needed to pull it down because of hosting and requirements of the software which was quite unstable.

Luckily, I have discovered a NEW way to host a community;

http://wehavems.ning.com/

Come and join me!!!

Coping with Invisible MS

Article Appeared in the Alliance Exchange
Published by Avonex
Issue: August 1999

Six years ago, Sherri Connell parked in a handicapped space at a shopping center near her home in Littleton, CO. When she returned, a sheriff's car was blocking hers. She showed the deputy her handicapped placard, her registration, her MS Center identification card, and her driver's license, and explained that she is allowed to park in handicapped spaces because she has multiple sclerosis. He put his hands on his hips, looked down at her in disbelief, and said, "I think you stole this placard. I saw you walk into the store, and I'm tired of people parking in handicapped places who don't belong there." Twenty minutes later, shaking and crying in frustration, Sherri demanded the deputy's name and badge number and told him that if he didn't move his car, she was driving through it. "I reported him," Sherri says, "and I got an apology from the sheriff's department. But I was totally humiliated."

Sherri's experience isn't unusual. Many people assume that handicapped parking is reserved for those who use wheelchairs and find it hard to believe that someone like Sherri, 37, who walks normally and looks perfectly healthy, could possibly be sick. Even family members, friends, and caregivers can have trouble understanding the invisible symptoms of MS, which can include weakness, pain, fatigue, vertigo, and bladder and sexual problems, as well as cognitive changes such as difficulty in thinking clearly and memory loss.

After Sherri recovered from her first MS exacerbation - numbness on her left side that prevented her from walking - a friend asked if she was afraid of losing disability payments if the local social service agency discovered that she was able to walk again. If she could walk, the friend said, surely she could work. "I could work in a wheelchair. It's the fatigue and the pain that sometimes keeps people with MS from working," Sherri said.

"Most people with MS are not in wheelchairs, and we're not in hospitals all the time, either," says Liz Knepper, 28, of Chicago, IL, whose primary MS symptom is vertigo. "People at work who knew I had MS would say 'Oh, you got dizzy? That's not too bad.' But I'd go to sleep with my hand pressed against the wall to steady myself and wake up feeling that the room was spinning out of control. You can often explain fatigue, numbness, or vision problems, but when you tell people you are dizzy, they just don't get it." Even good friends can be inadvertently insensitive. "Sometimes friends bring me dinner, but they come too late or stay too long. I don't have the heart to tell them that I'm tired or ask them to leave," explains Liz.

Speaking Out About Symptoms

"It is important for people with invisible MS symptoms to describe what they're experiencing, so that they can get the help they need," says Professor Jeffrey Greenstein, MD, director of the Multiple Sclerosis Center at Temple University Medical School in Philadelphia.

He urges his patients to educate friends, relatives, caregivers, and coworkers about MS. MS ActiveSource, MS society publications, and support groups are good sources of information for a better understanding of MS symptoms.

These resources can also be used when you're trying to explain your invisible MS symptoms. Try to graphically illustrate how you feel. Describe how fatigue affects you as specifically as you can: For example, "I'm so exhausted I feel as if I would pass out if I tried to stand up." Tell what your pain feels like: a knife scraping your skin; a hot iron held to your leg. Or describe dizziness as Liz does: lying in bed with your hand pressed against the wall to steady yourself. You may have to remind people of what you've told them in the past: "Do you remember me telling you about the fatigue (or dizziness, numbness, or vision problems) I feel as a result of having MS?"

You can also get help in dealing with problems related to invisible MS symptoms from Wayne and Sherri Connell's website, www.MyIDA.org, which they designed to help people with MS and other chronic diseases deal with the "invisible" nature of their disorders. Sherri sums up the dilemma this way: "Some people think we have a chronic disease because we are weak. We need to help them understand that we are weak because we have a chronic disease."

Article Appeared in the Alliance Exchange
Published by Avonex
Issue: August 1999

Bladder Issues in MS

urgency, frequency, mixed

Did you know that bladder symptoms are common in people with MS? An MS'er may experience urinary urgency, frequency, incontinence (wetting oneself) or retention (difficulty passing urine). Sadly, this is probably one of the most undertreated and misunderstood symptoms until it REALLY becomes a problem.

Bladder function tests such as post-void residual ultrasounds and urodynamic studies can pinpoint the source of bladder problems so the correct medication and treatment is appropriately prescribed. In addition, urologic follow-up may involve testing of the bladder muscle strength and muscle tone so that the proper intervention may be prescribed.

Rather than restricting fluids to disguise the problem, it is recommended that people with MS talk to their healthcare providers for follow up. Restricting fluids can cause urinary tract infections and affect bowel function as well.

It is also recommended that people self-monitor for changes in urinary function creating a voiding diary which can be used during certain timeframes and check the color of their urine. For example, suddenly darkened urine with no symptoms might be an early indication of an oncoming infection.

Urinary tract infections, which are caused by an overgrowth of bacteria in the urine, are treated with antibiotics. Testing the urine can reveal the type of organism causing the infection, so the correct antibiotic is selected. Burning on urination and foul smelling urine should be investigated, as they are likely signs of a urinary tract infection.

In some cases, urine must be emptied manually by threading a small tube (intermittent catheter) through the urethra and into the bladder.

Select list of medications commonly used to treat bladder problems:

Tofranil® (Imipramine)
Ditopan XL®, Oxytrol® Patch (Oxybutynin)
Detrol®, Detrol LA® (Tolterodine)
Vesicare® (Solifenacin)
Sanctura® (Trospium)

The Almighty Catheter

Dealing with MS-Bladder issues straight up!

I am not going to lie and tell you that getting the news that I had to use a catheter to help me pee was the easiest thing in the world because it wasn't. It was a little terrifying for me because I didn't have anyone there to encourage me, tell me it was going to be ok, and that I would get used to doing it rather quickly.

I didn't have anyone ... but YOU have me. I'm telling you that the entire process is so non-dramatic that you will wonder (after a week or two) why you put all the energy into worrying about it in the first place. Soon you will also begin to discover that the cathing acts like physical therapy on the bladder and that it will begin to calm down and become more predictable. YOU will have control instead of IT having control. And that's the whole idea, right?

Here one of my little tricks for carrying my "hoses" (my pet name for them because I refuse to let them play top dog).

- get a little makeup pouch (a pretty one, stylish one -- whatever fits you)

- get a little cosmetic mirror (you will probably need this to start out, but after a little time and getting to know the geography of your body ... no need)

- some KY lube packets (or a small tube).

- get some anti-bacterial gel in a little bottle to cleanse your hands

- get some alcohol wipes to wipe down the cath until you can use soap and water or a dishwasher (no kidding)

- don't forget your catheters!!! Keep several in your pouch.

There you have it, a cath-kit! I have about 3 of them made up and strategically located. I don't need the mirrors anymore ;-)

If you need a GREAT place with the best prices to buy catheters, use the following link.

After using Mentor Self-Cath (PVC) catheters for several years, I have switched to a smaller Rochester made out of Silicone (stay away from anything with latex). I prefer a 6" catheter that is a little thinner and more flexible.

Clean Intermittent Self-Catheterization for Women

I've been "self-cathing" for about 4 years and one would think that the way I talk about it so freely, I'd gotten my pilot's license or something more exciting like that. I feel that I have a mission to help people move through the psychological barriers of self-catheterization and move towards wellness. Keeping that in mind, I am never afraid to talk about cathing if the occasion arises.

A dear friend and neighbor of mine just began the task of self-cathing. For her, it has been a bit of a chore as she struggles to understand her anatomy. This is not unusual. There are some things we take for granted as women -- bathroom duties are one of those things.

Over the past few days, I have had to assist my friend with several phone calls and going beyond the boundaries of friendship in discussion and moving towards that of being "MS Sisters". As the discussions turned anatomical, I searched for the right tool to find that would teach her and others. This tool was located in a pamphlet which I am including here:

Self-Catheterization for Women Brochure

Coping with Fatigue in MS Takes Understanding and Planning

Doctor explores physical causes of fatigue

Alexander Burnfield, M.B., M.R.C. Psych.

Editor's Note: The following article was adapted from a speech by Dr. Alexander Burnfield to members of Action for Research into Multiple Sclerosis (ARMS), a British organization dedicated to raising money for research and sponsoring telephone counseling services to its members. Dr. Burnfield is a psychiatrist who has M.S.

What Do We Mean by Fatigue in Multiple Sclerosis?

Fatigue is a sensation that is both universal to all and very specific to people who have multiple sclerosis. The fatigue that all people experience is due to tiredness and weakness affecting muscles after exercises or exertion. In multiple sclerosis, that fatigue that many people have is rather different since the nervous system as well as the muscles are involved.

The cause of MS fatigue is not fully understood. What may happen is that great difficulty is experienced in the transmission of nerve impulses along demyelinated nerves. The strength of the impulses is much reduced, resulting in feelings of weakness and tiredness. Sensory nerves as well as motor nerves are involved in this kind of fatigue.

Fatigue of motor nerves can cause weakness, a tired heavy feeling of muscles, incoordination and shakiness. Fatigue of sensory nerves, which help us to see, to hear, to taste, to smell and enable us to distinguish how objects feel, can cause problems in one or more of these senses. When we are fatigued, we don't just experience a heaviness, but we may also have blurred vision, numbness, or other difficulties in the sensory system ...

You can read the rest here

Optic Neuritis in Multiple Sclerosis

http://www.kellogg.umich.edu/patientcare/conditions/optic.neuritis.html

Optic Neuritis is one of the most frequently presenting symptoms of multiple sclerosis, although there are other causes. I experienced my first symptoms of "ON" back in 1990, acquired bi-focals for a short period of about 3 months and then went back to normal. I do remember the day it happened and the raging headaches back at this time. Also, this was one of my presenting symptoms right before I was diagnosed officially in 2002. Optic Neuritis hit me about 7 times bouncing painfully from eye to eye. If you suffer from this symptom, you understand what I mean.

Definition

Optic neuritis is an inflammation of the optic nerve. The optic nerve allows you to see by carrying images from your retina to your brain. The optic nerve is like a cable of electrical wires or nerve fibers. Each wire carries a part of the visual information to the brain. If some or all of the nerve fibers become inflammed and do not function properly, vision becomes blurred. With optic neuritis, the optic nerve becomes swollen and the nerve fibers do not work properly. Vision can range from near normal to very poor depending on the number of inflammed nerve fibers.

Various diseases and conditions may cause optic neuritis. In many cases, however, the cause of optic neuritis is not known. The nerve of one or both eyes may be affected. Some people, especially children, develop optic neuritis following a viral illness such as mumps, measles or a cold. In others, optic neuritis may occur as a sign of a neurologic disease affecting nerves in various parts of the body.

Symptoms

* Blurred vision in one or both eyes (especially after exercising or taking a hot bath)

* Dim vision (as if the lights were turned down)

* Abnormal color vision (dull and faded colors)

* Pain behind the eye, particularly when moving the eyes

The symptoms described above may not necessarily mean that you have optic neuritis. However, if you experience one or more of these symptoms, contact your eye doctor for a complete exam.

Treatment

Optic neuritis usually occurs suddenly. If you experience any of the symptoms listed above, call your ophthalmologist. By looking in the back of your eye with an instrument called the ophthalmoscope, the optic nerve can be checked for swelling. Optic neuritis may be confused with other causes of poor vision. Other tests such as color vision, side vision, and the reaction of the pupil to light may be performed.

Cognitive Function

From The MS Information Sourcebook, produced by the National MS Society.

Approximately 50% of people with MS will develop some degree of cognitive dysfunction, affecting the ability to think, reason, concentrate or remember. However, only 5-10% of persons with MS develop problems that are severe enough to interfere in a significant way with everyday activities. While cognitive dysfunction is more common among people who have had the disease for a long time, it can be seen early in the disease course-even as the first symptom. There is no relationship between level of physical disability and degree of cognitive impairment; a person with virtually no physical limitations can have significant cognitive impairment, while a person who is quite disabled physically can be unaffected cognitively.

MS may affect cognitive function for several reasons. First and foremost, MS damages both myelin and the nerve cells within the brain, thereby compromising a variety of functions handled by the brain. In fact, MRI studies have indicated that the extent of demyelination in the brain is related to severity of cognitive dysfunction. However, MS can also affect cognition indirectly. MS is often associated with depression, anxiety, stress, and fatigue, all of which may compromise cognitive functioning. Fatigue can be particularly challenging to one's ability to sustain any type of challenging mental task.

Just as the physical symptoms of MS can vary considerably from person to person, cognitive changes can as well. Moreover, it is common for certain functions to be largely intact while others are more severely affected. The cognitive function most likely to be affected appears to be memory. Other cognitive functions frequently affected in MS include speed of information processing, executive functions (planning and prioritizing), visuospatial functions (impairment in visual perception and constructional abilities), abstract reasoning and problem-solving, and attention and concentration-especially sustained attention and ability to divide attention between separate tasks. One of the most vexing cognitive deficits seen in MS is word-finding difficulty-the experience of having a word on the tip of your tongue but not being able to remember it .... (continued here)

Spasticity

From The MS Information Sourcebook, produced by the National MS Society.

Spasticity refers to feelings of stiffness and a wide range of involuntary muscle spasms (sustained muscle contractions or sudden movements). It is one of the more common symptoms of MS. Spasticity may be as mild as the feeling of tightness of muscles or may be so severe as to produce painful, uncontrollable spasms of extremities, usually of the legs. Spasticity may also produce feelings of pain or tightness in and around joints, and can cause low back pain. Although spasticity can occur in any limb, it is much more common in the legs.

There are two types of severe MS-related spasticity:

In flexor spasticity, mostly involving the hamstrings (muscles on the
back of the upper leg), and hip flexors (muscles at the top of the upper thigh), the hips and knees are bent and difficult to straighten.

In extensor spasticity, involving the quadriceps and adductors (muscles
on the front and inside of the upper leg), the hips and knees remain straight with the legs very close together or crossed over at the ankles.

Spasticity may be aggravated by sudden movements or position changes, muscle tightness ("adaptive shortening"), extremes of temperature, humidity, or infections, and can even be triggered by tight clothing.

Treatment with Exercise and Medication

There are a number of therapeutic approaches to the management of spasticity. Because spasticity varies so much from person to person, it must be treated
on an individual basis and demands a true partnership between the person with MS, physician, nurse, physical therapist, and occupational therapist.

Treatment begins with the physician recommending ways to relieve the symptoms, including exercise, medication, changes in daily activities, or combinations of these methods. The physician will track the progress and make referrals to other health professionals such as occupational.

Treatment with Exercise and Medication

There are a number of therapeutic approaches to the management of spasticity. Because spasticity varies so much from person to person, it must be treated on an individual basis and demands a true partnership ...

Read more here

Depression and MS

National MS Society Depression Sourcebook

Depression is a term commonly applied to a wide variety of emotional states in MS. These may range from feeling down for a few hours on a given day to severe clinical depression that may last for several months. People with MS and all those closely associated with them should be aware that depression in its various forms is common during the course of multiple sclerosis. In fact, studies have suggested that clinical depression, the severest form of depression, is more frequent among people with MS than it is in the general population or in persons with other chronic, disabling conditions. Depression does not indicate weak character and it should not be considered something shameful that needs to be hidden. Depression is not something that a person can control or prevent by willpower or determination. In its most severe forms, depression appears to be a chemical imbalance that may occur at any time, even when life is going well.

While we still do not fully understand the nature of depression in MS, we have learned much about it in recent years:

* Depression may be "reactive"-the result of difficult life situations or stresses. It is easy to understand how a diagnosis of multiple sclerosis, a chronic condition with the potential for progressing to permanent disability, can bring on depression.
* Depression may also be a result of the MS disease process itself, since MS damages the myelin and nerve fibers deep within the brain. If MS damages areas of the brain that are involved in emotional expression and control, a variety of behavioral changes can result, including depression.

* Depression in MS may also be associated with MS-related changes that occur in the immune and/or neuroendocrine systems. For example, there is some evidence that in persons with MS, changes in mood are accompanied by changes in certain immune parameters.

* In contrast, persons with MS who are more severely disabled are not necessarily more likely to be depressed. This may be due to the fact that people in general are resilient and have a remarkable ability to adapt to adverse circumstances. Depression can occur at any point in the course of the disease.

* People with MS are at increased risk for depression when an exacerbation takes place and disability increases MORE

Disease Modifying Medications in MS (CRAB)

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MS Medications

I wanted to pass along links that provide information on the various multiple sclerosis medications that help with disease- modification and relapse management.

Multiple Sclerosis Health Center on WebMD: Medications for multiple sclerosis (MS) may be used:
* During a relapse, to make the attack shorter and less severe.
* Over a long period of time, to alter the natural course of the disease (disease-modifying therapy).
* To control specific symptoms as they occur.
Treatments - National MS Society: Although there is still no cure for MS, there are various strategies available to modify the disease course, treat exacerbations, manage symptoms, and improve function and safety. In combination, these treatments enhance the quality of life for people living with MS.

About Accelerated Cure Project

Accelerated Cure Project is assembling the largest collection of samples and data from the described population available to date. Our eventual goal is to enroll 10,000 subjects, with a first phase to collect 1,000 in progress now at collections sites across the country.

The purpose of the repository is to provide a much-needed resource to the researchers studying the causes of these demyelinating diseases. To date, research advances have been hindered by the lack of large collections of well-qualified samples and data from affected subjects and controls.

Without these samples, adequately sized studies are impossible to conduct. Through development of the repository, not only are large numbers of samples made available to the research community, but the results from the distinct experiments performed on this same set of samples can be cross-correlated and analyzed to find combinations of factors that predispose or protect against these demyelinating diseases.

The Repository will Accelerate Research by:

Making scientists more productive - with our support, they can conduct much larger studies, they don't have to spend years building their own sample collection, and they will make much faster progress toward determining the causes of these diseases

Making each scientific experiment more powerful and more meaningful by combining the data it produces with other past and future results.

Encouraging investigators from outside the field to study these diseases. We may find brilliant researchers with techniques that would be ideal for studying these demyelinating diseases but these researchers don't have access to people with them. We can make it possible for these techniques to benefit research into the causes of these diseases. Likewise, commercial companies developing innovative analysis technologies might become interested in studying these demyelinating diseases because of the availability of our samples.

Accelerating the process of determining the causes of these diseases and channel these findings into developing cures, treatments, new animal models, diagnostic and prognostic techniques, and other important goals.

Contact Repository Director, Sara Loud at 781-487-0032 or acp-study-director@acceleratedcure.org to learn more about participating.

Accelerated Cure Project - Sample and Data Repository

Do you have Multiple Sclerosis, Transverse Myelitis, or another demyelinating disease?

Join Accelerated Cure Project as we develop a large-scale sample and data repository to help researchers identify the causes of:

Multiple Sclerosis
Transverse Myelitis
Acute Disseminated Encephalomyelitis
Neuromyelitis Optica
Optic Neuritis

Participants in this study will provide blood samples and vital background information to assist researchers in determining the causes of these demyelinating diseases.

All personal information will be kept confidential.

Sample and data collection is currently underway at six sites:

- Barrow Neurological Institute (Phoenix, AZ)
- Johns Hopkins (Baltimore, MD)
- MS Research Center of New York (NY, NY)
- Shepherd Center (Atlanta, GA)
- University of Massachusetts MS Center (Worcester, MA)
- MS Clinical Center University of Texas Southwestern (Dallas, TX)

To learn more about participating in the repository or Accelerated Cure Project, contact:

Accelerated Cure Project (Waltham, MA)
Sara Loud (Repository Director): 781-487-0032
E-mail: acp-study-director@acceleratedcure.org

Or visit:

http://www.acceleratedcure.org/repository/index.php

To learn more about Accelerated Cure Project's free offerings and resources visit:

http://www.acceleratedcure.org/offerings

To receive our free quarterly newsletter, click on the "Sign Up" button at the top of every web page at:

http://www.acceleratedcure.org

Accelerated Cure Project, a national nonprofit located in Waltham, MA, is developing a sample and data repository through the collection of samples and data from people with Multiple Sclerosis, Transverse Myelitis, Neuromyelitis Optica (Devic's), Acute Disseminated Encephalomyelitis, and Optic Neuritis, their affected and unaffected relatives, and unaffected, unrelated matched controls.

MS News at Accelerated Cure

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CMSC-NARCOMS: Enroll in the MS Registry

Diagnosed with MS? Be a part of something important ...

The North American Research Committee On Multiple Sclerosis (NARCOMS) Project was initiated in 1993 by the Consortium of Multiple Sclerosis Centers. Until late last year, the project was led by Dr. Tim Vollmer, an international leader in multiple sclerosis care, immunology, and MS research. In November 2004 Dr. Denise Campagnolo assumed the directorship of NARCOMS, which is currently based at Barrow Neurological Institute in Phoenix, Arizona. NARCOMS has developed an MS Patient Registry that is the largest of its kind in the world. The primary purpose of the NARCOMS project is to facilitate multi-center research in the broad field of Multiple Sclerosis. Collaboration between centers of excellence in Multiple Sclerosis is essential for rapid progress in the development of better treatments for MS and for greater understanding of the disease.

Project Status and Initiatives
As of May 2007, the number of Registry participants has reached over 32,000 and new participants are joining every day. Convenient online enrollment for anybody diagnosed with MS is available at this website (Enroll online)

Individuals with Multiple Sclerosis who enroll in the NARCOMS Registry receive the printed version of the Multiple Sclerosis Quarterly Report (MSQR) four times a year. This journal is free of charge and includes original review articles, NARCOMS news, breaking news, as well as listings of clinical trials in progress and open for enrollment.

By participating in the patient Registry:

1) You are helping to provide the information needed to learn about the variations of MS in a very large group of patients.

2) You help us monitor the effects of various treatments. Your information may be providing ideas for future research.

3) You will be receiving the printed version of the MSQR free of charge. (this is a great journal ;)

4) You will be informed of recent studies and results.

5) You will be notified of clinical trials in which you may be eligible to participate.

Convenient online enrollment for anybody diagnosed with MS is available at this website (Enroll online)

Heat Sensitivity in MS

Although the symptoms of multiple sclerosis (MS) tend to worsen in the heat, it is important to remember that this is only a temporary problem in most cases. When the temperature returns to normal, symptoms typically subside. Below are some strategies for beating the heat:

-- Stay inside an air-conditioned environment when it's extremely hot

-- Use cooling devices such as vests and neck wraps

-- Wear lightweight, cotton clothing

-- Swim or exercise in a cool pool

-- Have a cold drink

Check your body temperature if you think you have a fever and treat it as soon as possible by consulting your physician, who may advise taking acetaminophen or a non-steroidal anti-inflammatory such as ibuprofen.

Make sure to take a look at the "Chillow" and a cooling vest -- these types of items help A LOT!

Cooling Equipment Distribution Program (MSAA)

Multiple Sclerosis Association of America

The following program is coming from the http://www.msaa.com/programs/cooling.html - Multiple Sclerosis Association of America Website.

Many people with multiple sclerosis are heat sensitive. MS research has proven that heat and humidity often aggravate common MS symptoms. MS research has also proven that cooling the body can help lessen the negative effects of heat and humidity on a person with MS.

MSAA's Cooling Equipment Distribution Program is a highly successful branch of the Equipment Distribution Program. In association with the National Aeronautics and Space Administration (NASA), MSAA has conducted extensive research into the effects of moderate, controlled cooling on individuals with heat-sensitive MS. Along with other research studies, results have repeatedly shown that many individuals with heat-sensitive MS find temporary relief of certain symptoms by wearing active cooling garments. Among others, symptom relief may include improvements in energy level, cognitive processing, and motor function through the use of such cooling devices.

The Cooling Equipment Distribution Program provides special cooling apparel at no charge to individuals with MS. "Active Suits" have a separate cooling unit that circulates cool liquid through a vest and cap worn by the user. "Passive" cooling apparel includes vests, collars, bandanas, and wristbands that either hold cool inserts or contain special material that remains cool for up to two hours.

Active cooling is considered a therapy and requires both a doctor's prescription and supervision for usage. Heat is extracted from the system by re-circulating the fluid through ice. Clinical research has shown that active cooling systems can significantly reduce the temperature in certain areas of the body. When areas of the central nervous system that have been demyelinated are cooled, the conductivity across the damaged area is greatly enhanced. This increased conductivity allows more effective transmission of signals, which can reduce some symptoms.

Passive cooling systems help maintain a cooler body temperature. These can be used outdoors in hot weather or during exercise regimens. These passive systems do not reduce body temperature, and are not considered a therapy. They do provide relief from heat for short periods of time.

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continued MSAA Cooling Equipment Distribution Program

http://www.msaa.com/programs/cooling.html

Apply for This Program

Step 1: Click here to view the Cooling Catalog

Step 2:Download the Program Application(.pdf) (en español .pdf) Submit just one application form to cover your selections.

Step 3: Please complete the forms online, print, and sign the forms.

Step 4: Mail the completed forms and any necessary additional documentation (see the Program Application) to:

MSAA
Attn: Program Coordinator - Cooling Equipment Distribution
706 Haddonfield Rd.
Cherry Hill, NJ 08002

Multiple Sclerosis and SSDI (Social Security Disability Insurance) & SSI (Social Security Income)

for those with Multiple Sclerosis who are US Citizens

Social Security Disability Benefits and MS

Fortunately, Multiple Sclerosis is recognized by the Social Security Administration (SSA) in their list of impairments that qualify for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI). Unfortunately, simply being on this list does not mean that people who are diagnosed with Multiple Sclerosis automatically qualify for SSDI or SSI.

The Social Security Administration classifies Multiple Sclerosis as a neurological disorder in their list of impairments. To qualify for SSDI or SSI, people with MS must show that their impairments are severe enough to prevent them from working. Some of the factors required for the Social Security Administration to grant Social Security Disability benefits for Multiple Sclerosis include the following:

* Persistent Disorganization of Motor Function in the form of paresis or paralysis, tremor or other involuntary movements, ataxia and sensory disturbances (any or all of which may be due to cerebral, cerebellar, brain stem, spinal cord, or peripheral nerve dysfunction) which occur singly or in various combinations, frequently provide the sole or partial basis for decisions in cases of neurological impairment

* Visual Impairment involving less than 20/200 vision after best correction, 20% or less visual field efficiency, or visual efficiency of the better eye after best correction is 20% or less.

* Mental Impairment involving psychological or behavioral abnormalities demonstrated by the presence of specific mental disorders judged to be related to the abnormal mental state and loss of previously acquired functional abilities.

* Significant, Reproducible Fatigue of Motor Function with substantial muscle weakness on repetitive activity, demonstrated on physical examination, resulting from neurological dysfunction in areas of the central nervous system known to be pathologically involved with the multiple sclerosis process.

The assessment of impairment depends on the degree of interference with locomotion and/or interference with the use of fingers, hands, arms, or how vision affects a person's ability to perform tasks associated with working.

Nolo's Guide to Social Security Disability: Getting & Keeping Your Benefits

by: David A. Morton

This was the book that I personally used to help me understand the process of applying and appealing a decision made by the SSA. Highly recommended! A CD-Rom is also included.

Amazon Price: $19.79 (as of 07/04/2009)

Disability Compensation Poll

This poll is to inquire about those that receive disability compensation. The types of compensation mentioned are:

Social Security Disability Insurance (SSDI)
Long Term Disability Insurance (LTD)
Veterans Administration Disability Compensation (VA)

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A Plexo on MS and Disability

The following link list contains links I have gathered on MS and disability. This means applying for it, etc. Feel free to add relevant you discover them.

Multiple Sclerosis (MS) - Resources for Living with MS and Staying Well

My journey with Multiple Sclerosis

Contents at a Glance

Contents at a Glance

A Down & Dirty MS Definition for the Non-MS-er

Diagnostic Criteria for MS

Exactly how is MS diagnosed?

What type of MS do you have?

Different "types" of Multiple Sclerosis defined

Taken from: http://www.wisegeek.com

Getting a Diagnosis of MS ...

"We Have MS" Networking Community

Coping with Invisible MS

Bladder Issues in MS

urgency, frequency, mixed

The Almighty Catheter

Dealing with MS-Bladder issues straight up!

Clean Intermittent Self-Catheterization for Women

Coping with Fatigue in MS Takes Understanding and Planning

Doctor explores physical causes of fatigue

Optic Neuritis in Multiple Sclerosis

http://www.kellogg.umich.edu/patientcare/conditions/optic.neuritis.html

Cognitive Function

From The MS Information Sourcebook, produced by the National MS Society.

Spasticity

From The MS Information Sourcebook, produced by the National MS Society.

Depression and MS

National MS Society Depression Sourcebook

Disease Modifying Medications in MS (CRAB)

MS Medications

About Accelerated Cure Project

Accelerated Cure Project - Sample and Data Repository

MS News at Accelerated Cure

CMSC-NARCOMS: Enroll in the MS Registry

Diagnosed with MS? Be a part of something important ...

Heat Sensitivity in MS

Cooling Equipment Distribution Program (MSAA)

Multiple Sclerosis Association of America

continued MSAA Cooling Equipment Distribution Program

http://www.msaa.com/programs/cooling.html

Multiple Sclerosis and SSDI (Social Security Disability Insurance) & SSI (Social Security Income)

for those with Multiple Sclerosis who are US Citizens

Nolo's Guide to Social Security Disability: Getting & Keeping Your Benefits

Disability Compensation Poll

A Plexo on MS and Disability

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Vacationing With Multiple Sclerosis

SOURCES: Candy Harrington, editor, Emerging Horizons. Jani Nadir, spokesperson, Society for Accessible Travel and Hospitality. Robert Fox, medical director, The Cleveland Clinic's Mellon Center for MS. Christine Lombardi, MS patient.

Links for Vacationing with Multiple Sclerosis

My Personal Journey with MS

Keep Your Dreams Alive

The MS Workbook

Multiple Sclerosis News From Medical News Today

My MS Blog - the day-to-day life of a person with Relapsing-Remitting MS

Study Links Multiple Sclerosis, Mono

Strong possibility Epstein Barr Virus (EBV) may cause Multiple Sclerosis

MS & Swallowing Problems

Dysphagia

Mono Poll

Cooling Garments

Cooling Bandanas on eBay

Caregiver Resources

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