MS Maze

If you are steadily losing your ability to walk… to move… to remain independent… your tolerance for extended debate and controversy over a possible treatment, if not a cure, is put to the test.

In this case, debate centers around “Liberation Treatment.” All around the world people with multiple sclerosis have been clamoring for action, ever since last September, when cardiovascular surgeon Dr. Paolo Zamboni released the results of a preliminary study of MS patients indicating a link to chronic cerebrospinal venous insufficiency (CCSVI), a narrowing of the veins that restricts the flow of blood from the brain, causing iron build up, in turn causing the degeneration of neurons.

Dr. Zamboni undertook this research in response to his wife’s own heartbreaking battle against MS. The resulting theory that some types of MS are caused by CCSVI, told him that it might be treated by clearing out major veins to free the blood flow. After confirming that his wife did indeed have CCSVI, he opened the veins by using a small inflated balloon to clear the blockage, a procedure that has earned the moniker Liberation Treatment. In the three years following her surgery, she has not had a relapse…

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Longing for Liberation

More on Multiple Sclerosis Education & Awareness Month

A Diagnosis Odyssey

Who Gets It and Why

Diagnosis, Denial, Due Diligence

Photo: http://www.sxc.hu/photo/1095865

Multiple sclerosis. Is that the disease that puts you in a wheelchair or leads to a nursing home? Montel Williams… Richard Pryor… Annette Funicello… all names associated with MS, and isn’t there a mountain climber or two that have it?

Confused? You are not alone. That’s why the Multiple Sclerosis Foundation recognizes March as National MS Education & Awareness Month, and the National MS Society designated March 8-14 as MS Awareness Week.

Throughout the month of March, I will offer glimpses into my own life with MS. While there is no such thing as a typical case, those who are familiar with MS will nod in recognition. If you are not familiar with MS, please allow us a few moments of your time during MS Awareness Month.

A Diagnosis Odyssey

It began with a seemingly benign but persistent tingly feeling in my upper right arm. It was the kind of thing you tend to dismiss and certainly not the kind of thing that makes you rush out to see a doctor.

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Multiple Sclerosis Awareness Month: A Diagnosis Odyssey

Photo: copyright WebCamp One LLC

It’s your body, and no one has more incentive to take care of it than you do. You can’t depend on anyone else to take the reins when it comes to your health. The responsibility lies with you. Don’t be a passive patient; be a squeaky wheel.

Read this post in its entirety and find how you can:

• Be pro-active about your health.
• Foster a strong doctor-patient relationship.
• Advocate for yourself and your family.
• Research and learn — seek out multiple trusted sources for medical information.

Health Care Self-Advocacy: Be the Squeaky Wheel

Photo: http://www.sxc.hu/photo/961618

Are you a good patient?

As the health care debate rages on, we continue to look at ways individuals can take charge of their own health and become our own best health care advocates.

The doctor-patient relationship is the cornerstone of patient-centered, compassionate medicine — but only if both doctors and patients take responsibility for their role and cooperate in the best of interest of the patient.

Most patients can come up complaints about doctors and doctors’ offices, but do you make some of these common mistakes with your doctor?

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Are you guilty of making these 5 mistakes with your doctor?

Photo: U.S. Centers for Disease Control

In the ongoing debate about health care reform, we often speak about access to health care, but there is another element to the debate that is equally important — what kind of care are you getting?

Health care is built upon the doctor/patient relationship, but that crucial relationship has changed drastically over the last decade. Without that fundamental building block, the practice of medicine suffers greatly.

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What happened to patient-centered, compassionate medicine?

Photo: U.S. National Institutes of Health

Photo: CDC

It is one of the top ten leading causes of death in the United States, responsible for an estimated 99,000 deaths per year. It is largely preventable and hits you when you’re down.

It is health care-associated infection. You get it when you go to the hospital for treatment, but end up with the added problem of a life-threatening infection.

Mandatory public reporting of health care-acquired infections and preventable medical errors will spur quality improvement. You can help by asking your representatives to support legislation to improve the prevention, detection, and treatment of healthcare-acquired infections.

Find out how you can be part of the solution… read this post in its entirety:

What Causes 99,000 Deaths and is Largely Preventable?

“If you think you may have (disease of choice), ask your doctor about (latest pill).” Rather than advise that you seek diagnosis and consider all treatment options, you are directed to request a particular prescription. Sometimes it’s every day folks urging us on, sometimes it’s a celebrity endorsement — none so surprising as Brooke Shields telling us about the pill that will give us longer, fuller lashes. Seriously.

Pharmaceutical companies are playing into every fear and every illness, real and imagined, as never before. Why market only to doctors when you can reach the patient — the consumer — directly. The number of pharmaceutical ads in prime time television has risen so dramatically that they are all but impossible to ignore. Whatever ails you, there’s a pill to make you feel better.

Photo credit: http://www.sxc.hu/photo/755991

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Should Pharmaceutical Ads be Banned from TV?

Simple human dignity and compassion. It’s hard to juxtapose that with end-of-life medical interventions that serve only to prolong pain and suffering, often against the wishes of the patient, while adding thousands of dollars to medical costs for no benefit.

Faced with such suffering and no hope of recovery, would you opt out if you could?

That’s exactly what one Washington woman did recently, becoming the first person to take advantage of the state’s Death with Dignity law. Diagnosed with stage 4 pancreatic cancer and certain death, she made a conscious, well thought out decision about her own death…

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Dignity and Compassion in Assisted Suicide

The Mayo Clinic has announced the launch of the Mayo Clinic Health Manager, an online application that stores your medical information in a single convenient location.

The health manager is designed for use by individuals to keep track of their own medical histories — diseases and conditions, prescription medications, immunizations, doctor visits, referrals, etc. You can also receive recommendations from the experts of the Mayo Clinic based on the information you provide.

According to The Mayo Clinic News, the Health Manager uses the Microsoft Health Vault system and is privacy and security enhanced.

Depending on your point of view, this could be an amazing tool for tracking your own family’s health information — or a huge privacy concern. I see it both sides of the argument at this point.

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Mayo Clinic Announces Online Health Manager

Death.

It’s a perfectly natural part of life, but somewhere along the way we’ve developed an unhealthy and sometimes cruel aversion to it. Not discussing imminent death only prolongs suffering for the patient and the family, while leaving many personal emotional issues unresolved.

According to a New York Times blog by Maggie Jones, even doctors struggle to talk about dying with their patients, and often fail to bring up the subject at all. As a consequence, patients suffer needless and often painful interventions at the end of their lives that can add thousands of dollars to a single patient’s medical costs with with no benefit.

We’ve got doctors who are uncomfortable with the subject, patients who don’t want to burden loved ones, family members who don’t want to upset the patient, and a group avoidance of the inescapable reality of death, a perfectly normal and natural event…

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Facing End-of-Life with Dignity

In an effort to educate ourselves, patients have turned to the internet. We look to sites like Web MD, The Health Central Network, WrongDiagnosis.com, (now part of HealthGrades.com), and RateMDs.com to answer our questions and reach out to other patients who may be able to advise us.

Offering a world of information at our fingertips, these sites provide valuable facts about health matters and prescription medications. But there are pitfalls for both patients and doctors.

The internet gives each of us the power to speak freely in an open and easily accessible forum. With the click of the mouse we can make an instant impact on another person’s life, for better or for worse. It is not a privilege to be taken lightly.

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Online Health Sites: Handle With Care

“You have multiple sclerosis.”

You’ve heard those words and now it’s time to decide what you’re going to do about it. There is no obvious right or wrong that applies to all MS patients. It’s not going to be that easy.

In my last post, Early Intervention in Multiple Sclerosis: Knowledge is Power, I spoke about self-education and research as the first items on the “to do” list, whether you’ve been definitively diagnosed or just suspect MS. Along with that, it is important to establish a relationship with a neurologist. Your doctor will inform you of your options and may make suggestions based on your individual symptoms.

One of the first questions that comes to mind is, “what is my prognosis?”

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You Have MS, now what are you going to do about it?

Make no mistake about it. Like it or not, digital health records will soon be the norm. There’s just no stopping technology.

If you’ve ever found yourself in a new doctor’s office or emergency room, filling out paperwork and racking your brain to recall medications, dates, and test results, you understand the reasons behind the push for digital records. At the very least, it’s time consuming, costly, and an added aggravation at the worst possible time. At most, digital records, almost instantly available to physicians and hospitals, will cut down on medical errors and save human lives.

The ugly truth is, whether health records are privately kept, government controlled, or a combination of both, privacy simply cannot be guaranteed. Period.

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Digital Health Records: Good, Bad, and Ugly

Swish… swish… swish…

My slippers make a swishing sound as I slide my feet over the bare wood floors of my home. “Pick up your feet!” My mother’s admonishment echoes through the years in my head. She wouldn’t say that to me now, of course. It isn’t laziness that causes me to drag my feet. It’s multiple sclerosis that makes it all but impossible to fully lift my feet off the floor when I walk.

Five years after diagnosis, I’m still fortunate enough to have relapsing/remitting MS rather than the progressive type. In a previous post, I rejoiced in new research that reversed disability in early-stage MS patients…

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Stem Cell Research: For or Against

What a story! For the very first time, disability has been reversed in patients in the early stages of multiple sclerosis. Let’s just take a moment to let that soak in. Disability has not only been halted, it has actually been reversed!

Multiple sclerosis is a disease of the central nervous system. In patients with MS, the immune system mistakenly attacks myelin, the protective sheath that surrounds nerves and speeds the transmission of impulses along the nerve cells. This causes a breakdown in communication between the central nervous system and the rest of the body, causing a wide variety of symptoms, including visual disturbances, vertigo, coordination problems, and paralysis.

The history-making research was conducted at Northwestern U…

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Reason to Rejoice – Research Breakthrough Reverses MS Disability