Current Treatments
BETASERON® (interferon beta-1b) is indicated for the treatment of relapsing forms of multiple sclerosis to reduce the frequency of clinical exacerbations. Patients with multiple sclerosis in whom efficacy has been demonstrated include patients who have experienced a first clinical episode and have MRI features consistent with multiple sclerosis

AVONEX® (Interferon beta-1a) is a 166 amino acid glycoprotein with a predicted molecular weight of approximately 22,500 daltons. It is produced by recombinant DNA technology using genetically engineered Chinese Hamster Ovary cells into which the human interferon beta gene has been introduced. The amino acid sequence of AVONEX® is identical to that of natural human interferon beta.

COPAXONE is the brand name for glatiramer acetate (formerly known as copolymer-1). Glatiramer acetate, the active ingredient of COPAXONE, consists of the acetate salts of synthetic polypeptides, containing four naturally occurring amino acids: L-glutamic acid, L-alanine, L-tyrosine, and L-lysine with an average molar fraction of 0.141, 0.427, 0.095, and 0.338, respectively. The average molecular weight of glatiramer acetate is 5,000 – 9,000 daltons. Glatiramer acetate is identified by specific antibodies.

Rebif® (interferon beta-1a) is a purified 166 amino acid glycoprotein with a molecular weight of approximately 22,500 daltons. It is produced by recombinant DNA technology using genetically engineered Chinese Hamster Ovary cells into which the human interferon beta gene has been introduced. The amino acid sequence of Rebif® is identical to that of natural fibroblast derived human interferon beta. Natural interferon beta and interferon beta-1a (Rebif®) are glycosylated with each containing a single N-linked complex carbohydrate moiety.

Tysabri is a monoclonal antibody that affects the actions of the body's immune system. Monoclonal antibodies are made to target and destroy only certain cells in the body. This may help to protect healthy cells from damage. Tysabri is used to treat relapsing forms of multiple sclerosis.
Gilenya™ is a new class of medication called a phingosine 1-phosphate receptormodulator, which is thought to act by retaining certain white blood cells (lympohcytes) in the lymph nodes, thereby preventing those cells from crossing the blood-brain barrier into the central nervous system (CNS). Preventing the entry of these cells into the CNS reduces inflammatory damage to nerve cells.


Early Symptoms
The most common early symptoms of MS include:
* Tingling * Numbness
* Loss of balance
* Weakness in one or more limbs
* Blurred or double vision

Less common symptoms of MS may include
* Slurred speech
* Sudden onset of paralysis
* Lack of coordination
* Cognitive difficulties
Listed above, the early symptoms. I tend to be a poster child for these. The symptoms that occur later on are too numerous just to list. There will be a link included that will get you to a site where these symptoms are listed and explained. Keep in mind that someone may have some of these or many of these, there is no way to tell.
Multiple sclerosis statistics show that approximately 250,000 to 350,000 people in the United States have been diagnosed with this disease. The life expectancy for people with multiple sclerosis is nearly the same as for those without MS. Because of this, multiple sclerosis statistics place the annual cost of MS in the United States in the billions of dollars. MS is five times more prevalent in temperate climates -- such as those found in the northern United States, Canada, and Europe -- than in tropical regions. Furthermore, the age of 15 seems to be significant in terms of risk for developing the disease. Some studies indicate that a person moving from a high-risk (temperate) to a low-risk (tropical) area before the age of 15 tends to adopt the risk (in this case, low) of the new area and vice versa. Other studies suggest that people moving after age 15 maintain the risk of the area where they grew up.

Friday, February 26, 2010

Support MS Activists on Capitol Hill

Take Action!

Next Wednesday, March 3, hundreds of MS activists from across the country will meet with their federal legislators on Capitol Hill as part of the National MS Society's annual Public Policy Conference. These important visits are an essential component of the Society's year-long and constant mission to advance public policy that will improve the lives of those living with MS and other chronic conditions. Take action today by writing your members of Congress so that our collective voice is heard.

MS activists will be discussing three priority issues:

* MS Research Funding in the Congressionally Directed Medical Research Programs (CDMRP): Emerging evidence indicates a potential link between combat service and an increased incidence of MS. MS activists have been successful in opening a new funding stream for MS research within the Congressionally Directed Medical Research Programs (CDMRP), receiving $5 million in FY 2009 and $4.5 million in FY 2010. Ask your members of Congress to support a $15 million appropriation for MS research within the CDMRP by signing the Dear Colleague letter circulated by Congressmen Russ Carnahan (MO-3rd) and Michael Burgess, MD (TX-26th) and Senators Sherrod Brown (OH) and Jim Bunning (KY).
* National MS and Parkinson's Disease Registries Act: A national MS surveillance system will help ascertain the true incidence and prevalence rates of MS nationwide, which is needed to faciliate research into potential environmental and genetic factors associated with MS. Ask your members of Congress to co-sponsor the National MS and Parkinson's Disease Registries Act (H.R.1362/S.1273).
* Full Funding of Lifespan Respite: Respite care services are vital to ensuring quality home-based care for people living with MS. The Lifespan Respite Care Act was enacted in 2006, but minimal funding has been appropriated over the past three years. Ask your member to support full funding for Lifespan Respite in FY 2011 in the amount of $94.81 million. Your Representative can signal his/her support by signing the Lifespan Respite Dear Colleague letter being circulated by Congressmen Jim Langevin (RI-2) and Lee Terry (NE-2).

Take action today and weigh in with your federal lawmakers on these important policy issues.

To keep future MS activism messages out of your junk folder, add the following address to your contacts or safe sender list: MSActionNetwork@nmss.org

Tuesday, February 23, 2010

Help Secure an Additional $15 Million for MS Research

Over the past two years, MS activists have helped secure nearly $10 million for MS research through the Congressionally Directed Medical Research Programs (CDMRP). The CDMRP is a Department of Defense (DoD) program that is funded annually via the Defense Appropriations Act. Just a couple of years ago, there was no MS program in the CDMRP. As a direct result of your activism not only does MS now have a specific research program but people living with MS also sit on the award panels to help determine how this research money is being spent.


Let's take the next step together and help secure more funding for MS research under the CDMRP. Ask your members of Congress to support a $15 million appropriation under the CDMRP that will help scientists to better understand the causes of MS and help find a cure. The large number of grant proposals recently submitted to the DoD for MS projects indicate that there is a clear need for more funding for MS research.

Take Action Now!

* Click on "Take Action!" and enter your ZIP code to follow up with a quick e-mail to your Senators and Representative.

Now is the perfect time to voice your support as MS activists prepare to meet with legislators on Capitol Hill during the National MS Society's Public Policy Conference, scheduled March 1-3, 2010.National MS Society





Walk MS
Walk MS

Walk MS is happening throughout towns in Massachusetts, Vermont & New Hampshire during April and May 2010. We unite as a community during Walk MS to create a world free of multiple sclerosis. Register today for 2010 Walk MS!

Walk MS is a simple, but incredibly powerful way for you to share in the hope for the future. Walk MS is our rallying point, a time and a place for us to stand together and to be together to help raise critical funds that support cutting edge research, drive change through advocacy, facilitate professional education and provide programs and services to help people with MS move their lives forward.

The primary goal of Walk MS is to raise funds to help people who have MS, and their families. Each walker 12 years of age and older is required to raise a minimum of $25.

Join the Walk MS movement and register today.








MS Challenge Walk
MS Challenge Walk

Once in a while, a challenge calls that you simply must answer. The MS Challenge Walk is the perfect way to embrace a personal challenge of spirit and strength, while making an important difference in the lives of people living with MS. We walk together during the two-day, 50-kilometer Challenge Walk across beautiful Cape Cod to make a powerful statement, to keep us moving toward a cure. Accept the challenge. It will be the most rewarding journey you’ll ever make.

Learn more and register today. Register before April 1, 2010 and receive an early registration discount of $25 (for a special $50 registration fee). Use the online discount code: earlybird.

Your participation provides help for today and hope for tomorrow through education, support, advocacy, and research funded by the National Multiple Sclerosis Society, Central New England Chapter. And that makes a huge difference to the 16,000 people and their families in Massachusetts, New Hampshire and Vermont (and 400,000 nationwide) who must live with MS every day.

Join as an individual, join a team, or create a team - and join the movement to create a world free of multiple sclerosis.

National Multiple Sclerosis Society
Central New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
msnewengland.org

Monday, February 15, 2010

My Past Treatments

I am posting this at the request of a reader. This pertains to me and may differ for others. I hope this will help others in choosing a treatment.

I was diagnosed with MS on August 12, 1999 at 2:30 PM when I got the results of an MRI from my neurologist. After getting over the shock, I was given several options and asked to research to see which one of them I want to use as a therapy. After reading about all of these I chose Avonex, mainly because it was only once a week. Copaxone was every day and Betaserone was every other day. My choice was based upon convenience more than anything else. I took this for five years even though the side effects were brutal for about half a day every Monday. The MRI reports showed no progression, thought that the therapy was working. At this time I had gotten sick of giving myself shots and used Copaxone far about ten months. I then had an exacerbation that put me in the hospital where I had MRI's of the brain and the Thorax. This showed that the MS was located not in the brain but the upper cervical spine which would explain why previous MRI of the brain showed no activity. At this point I am taking no disease modifying drugs.

That is only my story, and should no way affect anyone's decision to use the modifying drug. All of these drugs have the potential to slow progression of this illness. It is important for anyone who was MS to get as much information as they can and make an informed decision in conjunction with their doctor concerning the drug they should take. Personally, I think everyone should use a drug to slow progression.

It is appreciated that people utilize this blog, there is much information here. Comments can be left on the blog itself please feel free to do so. Another blog I do care be found at; http://stevewrenn.blogspot.com/. I do hope this will help people who have MS to get the information they need and to make an informed decision.

Friday, February 12, 2010

Depression

“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 to what common sense might suggest, 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 in any person with MS, at any point in the course of the disease.
* There is some evidence that people with MS are at increased risk for depression when an exacerbation takes place and disability increases.
* Severe depression can be a life-threatening condition because it may include suicidal feelings. One study found that the risk of suicide was 7.5 times higher among persons with MS than the general population.
* Depression can also be a side effect of some drugs, such as corticosteroids, which may be prescribed for the treatment of MS attacks. There is also some evidence that the interferon medications may trigger or worsen depression in susceptible individuals, although the research on this issue has yielded conflicting results.
* It is also important to keep in mind that depression occurs in people who do not have MS, and is a widespread problem in society in general.
* Depression can occur in children and is underdiagnosed in the elderly.

Distinguishing Depression from Normal Grieving

Depression is often hard to distinguish from grief. Persons with MS may experience losses—for example of the ability to work, to walk, or to engage in certain leisure activities. The process of mourning for these losses may resemble depression. However, grief is generally time-limited and resolves on its own. Moreover, a person experiencing grief may at times be able to enjoy some of life’s activities. Clinical depression is more persistent and unremitting, with symptoms lasting at least two weeks and sometimes up to several months. It’s important to distinguish between mild, everyday “blues” that we all experience from time to time, grief, and clinical depression. Clinical depression, which must be diagnosed by a mental health professional, is a serious condition that produces flare-ups known as major depressive episodes.
Symptoms of a Major Depressive Episode

* Sadness and or irritability
* Loss of interest or pleasure in everyday activities
* Loss of appetite—or increase in appetite
* Sleep disturbances—either insomnia or excessive sleeping
* Agitation or slowing in behavior
* Fatigue
* Feelings of worthlessness or guilt
* Problems with thinking or concentration
* Persistent thoughts of death or suicide.

Wednesday, February 10, 2010

MS Week in Jackson Village, NH is back!!

Date/Time: May 3 - May 7, 2010
Location: Jackson Village, NH
Tickets:

* Participants receive a FREE! Two-night stay including breakfast. (Limit one room per Person with MS. We cannot guarantee separate beds for guests.)
* Informative workshops
* Social activities during the week


Please read complete information prior to completing drawing form.
To enter the drawing or to get information about extended stay packages visit msnewengland.org

Session I
Arrive Monday May 3 & depart Wednesday May 6

Session II
Arrive Wednesday May 5 & depart Friday May 7


Individuals who attended by drawing in 2009 will not be eligible for the 2010 drawing. However, you may purchase an extended stay package (see below).

Deadline to apply for the drawing is March 17
Applicants chosen will be notified by March 23
We cannot guarantee requests for specific Inns through the drawing

For all confirmed participants a $75 refundable deposit will be required within 1 week

ALL RESERVATIONS must be made through the Central New England Chapter

Extended stay packages: Those purchasing extended stay packages will not be included in the drawing process, but will be registered for the appropriate weekday session. If you cancel your extended package you will be ineligible to participate and will be placed on the waiting list. Two night minimum required but additional nights can be purchased at the above rates
.
Extended two night stay packages are available at:
Silver Package: $250 per room ($125 per night)
Gold Package: $350 per room ($175 per night)

To purchase an extended stay package call the MS Week in Jackson Village hotline at:
1-800-344-4867, option 2, ext. 192 or email msweekinjacksonnh@mam.nmss.org with your name and phone number. Please visit the participating Inns of Jackson Village at their website to chose your accommodation.

Lodging Handicapped-Accessible Package offered
Carter Notch Inn No Silver
Eagle Mountain House Yes Silver
The Inn at Jackson No Silver
The Inn at Thorn Hill (Session II Only) Yes Silver & Gold
Snowflake Inn Yes Gold
The Wentworth Yes Gold
Whitney's Inn No Silver
Wildcat Inn & Tavern No Silver & Gold

Additional details on this program

If you have any questions, please contact Amber Stalker (amber.stalker@mam.nmss.org).

National Multiple Sclerosis Society
Central New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
msnewengland.org

MS Awareness Week 2010 Logo





MS stops people from moving. The National MS Society exists to make sure it doesn’t. We are a collective of passionate individuals, moving together to create a world free of MS. JOIN THE MOVEMENT

Early and ongoing treatment with an FDA-approved therapy can make a difference for people with multiple sclerosis. Learn about your options by talking to your health care professional and contacting the National MS Society at www.nationalmssociety.org or 1-800-344-4867.

National Multiple Sclerosis Society | 733 Third Avenue | New York, NY | 10017

Thursday, February 4, 2010

Maintain Health Care Reform Momentum!

The campaign to enact comprehensive health care reform is still alive, despite recent questions and opposition. With both the House and Senate passing health care reform bills, historic reform is within our grasp. MS activists have helped shape the debate by ensuring that the Society's health care reform principles are incorporated in all reform legislation in order to improve the quality of life for people living with MS and other chronic conditions. We have made more progress over the past legislative year than had been accomplished in the past 100 years-and we simply cannot let this opportunity pass us by!

People living with MS and other chronic diseases need quality, affordable and sustainable health care as much today as when we started this effort over two years ago. Write your members of Congress today and tell them to continue fighting for people living with MS and other chronic conditions!

The health care reform bills that have passed in both chambers of Congress contain provisions that reflect the intent of many of the Society's health care reform principles and represent great progress in improving health care for people living with MS and other chronic diseases. Both chambers' legislation will:

* Prohibit discrimination against an individual based on pre-existing conditions;
* Place limitations on out-of-pocket costs;
* Create new long-term care insurance coverage and expand Medicaid coverage for home and community-based services;
* Provide subsidies to those who cannot afford coverage;
* Ban coverage caps; and
* Require health care insurance coverage be renewable and portable

We are too close to quit now. Take action today and let Congress know that reform is needed and long overdue! Write to Congress and tell them to enact comprehensive health care reform without further delay!

To keep future MS activism messages out of your junk folder, add the following address to your contacts or safe sender list: MSActionNetwork@nmss.org

Wednesday, February 3, 2010

Multiple Sclerosis in the News

New research finds there may be a link between a common virus (Epstein Barr) and multiple sclerosis.

Epstein Barr sometimes causes mononucleosis, and researchers at Harvard report that women who show signs of having been exposed to the virus — even those likely exposed as children — appear to have a much higher chance of developing multiple sclerosis, as much as four times as great as women without the exposure.

But the researchers caution the correlation does not mean that Epstein Barr causes MS, a very serious nerve illness.


Multiple sclerosis is a disease that may affect any area of the brain and spinal cord. Multiple sclerosis does not affect nerve cells. Multiple sclerosis affects transmission of electrical signals to nerve cells. Multiple sclerosis is the most common cause of chronic neurological disability in young adults. Multiple sclerosis is not contagious.

As multiple sclerosis progresses, problems of sight become serious, such as dimness of vision, partial blindness, double vision, and the inability to control the movement of the eyeball.

Multiple sclerosis is also called MS.

What Causes Multiple Sclerosis?

The exact cause of multiple sclerosis is unknown. However, researchers believe multiple sclerosis is an inflammatory process that attacks a substance in the nervous system called myelin.

Myelin is an important substance. It surrounds the cells in the nervous system and facilitates rapid transmission of signals up and down neurons. When myelin is broken down, nerve impulses travel slower, causing symptoms that are characteristic of Multiple Sclerosis.

Symptoms of Multiple Sclerosis

Multiple Sclerosis causes symptoms and signs that vary unpredictably over decades, and may relapse, progress, or undergo spontaneous remission.

Symptoms of multiple sclerosis vary greatly depending on the site of inflammation. In general they affect sensory or motor function causing patients to experience fatigue, numbness, tremor, loss of vision, pain, paralysis, loss of balance, and bladder and bowel dysfunction, painful muscle spasms and numbness in the entire body. Men may experience erectile dysfunction. Women may have a loss of libido or difficulty reaching orgasm. Multiple sclerosis attacks can last for more than 24 hours.

Symptoms of multiple sclerosis may be triggered by exercise, exertion, or with increased body temperatures. When symptoms are triggered by increased body temperatures, they usually cease when the body temperature is returned to normal.

Multiple Sclerosis in the News

New research finds there may be a link between a common virus (Epstein Barr) and multiple sclerosis.

Epstein Barr sometimes causes mononucleosis, and researchers at Harvard report that women who show signs of having been exposed to the virus — even those likely exposed as children — appear to have a much higher chance of developing multiple sclerosis, as much as four times as great as women without the exposure.

But the researchers caution the correlation does not mean that Epstein Barr causes MS, a very serious nerve illness.

About Me

My photo
North Grafton, Massachusetts, United States
Well-educated, disabled at this point with Multiple Sclerosis. I am very glad that I was able to do the things that I have been able to do over the years. had to change the picture, this one's more realistic.