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 (MS)… some call it the MonSter, or the Beast. It is a demyelinating disease, an invisible illness, a mysterious ailment subject to many misconceptions. Who, what, where, when, why, how… all good questions.

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.

WHO gets MS? About 2.5 million people worldwide…

WHAT is MS? MS is a neurological disease in which…

WHERE is MS most prevalent? Northern latitudes farther…

WHEN do people get MS? It is difficult to pinpoint when MS begins, but diagnosis usually…

WHY do people get MS? That’s the big question! The cause…

HOW is MS treated? There are several…

Throughout the month of March, I will offer glimpses into my own life with MS in Care2 Healthy & Green Living. 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 Education and Awareness Month, and check back here in Care2 Causes in the weeks to come.

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Who Gets MS and Why

Photo: U.S. Centers for Disease Control and Prevention

Alone in her Birmingham, England home, a woman stirs a half teaspoon of cannabis into her hot tea. By seeking relief from pain and spasms caused by multiple sclerosis in this way she is, in the eyes of the law, a criminal.

She doesn’t take this action lightly and is not out for a recreational high. She simply wants a reprieve from the relentless pain that plagues her and, after sipping her tea, generally experiences about three hours of relief. Only those who live in chronic pain can fully understand her anguish.

Speaking of her predicament she says, “I want politicians to be nice to me… I’m sick.” One cannot put it more simply than that.

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A Toke a Day Keeps the Doctor Away

Multiple sclerosis is the ultimate player. First you see it, then you don’t. If you are confused about MS, you are far from alone.

First, what it is not: multiple sclerosis is not the same as muscular dystrophy or cerebral palsy. All people with MS are not in wheelchairs. It’s not a psychological problem.

So what is it?

MS is a neurological disease in which lesions form in the central nervous system, interrupting the transmission of signals to the rest of the body…

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11 Basics to Understanding Multiple Sclerosis

Imagine the desperation felt by people living with chronic, severe pain or discomfort — with no relief in sight. The list of symptoms brought on by multiple sclerosis is lengthy, and for people with progressive forms of MS, quality of life becomes an intensely personal issue. Until we walk in those shoes, our ability to truly empathize is limited.

The medical marijuana issue is all very cut and dry if you believe that marijuana is nothing more than a dangerous and illegal street drug. But the testimonials by the chronically ill give one pause. Quality of life and end of life issues take on a whole new meaning when it’s your life rather than a hypothetical exercise.

Is marijuana a miracle or a menace? The answer may be in the eye of the beholder.

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Marijuana for MS: Miracle or Menace?

“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?

It is estimated that more than 30 percent of insured patients with chronic illness cannot afford the co-payments for their medications, which can range from $300 to more than $3,000 per month. Most of these patients are ineligible for other patient assistance programs, forcing many of them to do without.

The Chronic Disease Fund is a non-profit organization that provides financial assistance to these underinsured individuals so that they can continue to take their much-needed medications and improve their quality of life.

Visit the Chronic Disease Fund’s website to learn more about what they do — and what you can do to help. The CDF is now on Facebook and Twitter, too!

In keeping with his campaign promise, President Obama is supporting the legal use of marijuana for medical purposes where state law allows. Currently, thirteen states have laws on the books that allow some use of medical marijuana, and medical marijuana proponents are pressing for more.

The Drug Enforcement Administration (DEA) will no longer raid state-approved marijuana dispensaries, according to Attorney General Eric Holder. This is welcome news for medical marijuana advocates and those who have found themselves caught in the legal quagmire between state law and federal law. Keeping in mind that we’re talking about controlled-use marijuana for medical purposes…

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Medical Marijuana Quagmire

Marijuana itself has long been a controversial subject. From the 1936 film Reefer Madness to today’s push to legalize the use of marijuana for medical purposes, marijuana continues to fascinate and mystify.

A bill currently winding its way through the Minnesota legislative process, if passed, would allow doctors to prescribe two and a half ounces of marijuana to provide relief from symptoms such as spasticity, nausea, and pain.

To date, 31 states have addressed the issue of medical marijuana, with varying and often confusing results. Thirteen states currently have laws on the books that offer protections for patients who possess medical marijuana with doctor’s approval. It is unclear whether federal or state laws apply in individual circumstances, leaving those who choose to use medical marijuana vulnerable to prosecution.

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Marijuana: from Reefer Madness to Push for Legalization

Low dose naltrexone (LDN), has been reported by some patients to relieve the symptoms of multiple sclerosis.

Naltrexone, approved by the FDA in 1984, was originally intended to assist heroin and opium addicts in breaking their addictions by blocking the “high” these drugs provided, thereby reducing the desire for recreational drugs. The average dosage is 50 milligrams per day.

LDN, a significantly lower dose, has been prescribed as an off-label use to treat a variety of conditions, including HIV, fibromyalgia, Chron’s disease, and multiple sclerosis.

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The low down on Low Dose Naltrexone

Most of us have little choice about the prescription drugs we need for what ails us. We should have a choice about who is privy to that information.

Privacy rights, eroding at an alarming rate, must be protected. At the very least, our medical information should remain ours to share.

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Privacy Problems at the Pharmacy

What if doctors discovered that you have a precursor to multiple sclerosis… would you want to be told? If so, what would you do with this information?

Advances in medical science are testing our boundaries in ways never before imagined. How far into the future do we want to see, and what if we are wrong? With our health care system in crisis, who among us would want to have the possibility of future illness or disability on our medical records?

Read:   Precursor to MS… Too Much Information?

The ongoing controversy over Tysabri, understandably, has many multiple sclerosis patients on edge. Count me in.

You can read the rest of this SharePost by visiting:
Tysabri: It Comes Down to Choices

And the saga continues. Month #3 on my new insurance and still trying to get my MS medications without completely loosing my grip.

Month #1 proved to be a nightmare of phone calls, emails and the threat of my head exploding. Mind you, I was not asking for anything special. Just what my insurance policy promises — a one month supply of MS meds at my maximum out-of-pocket of $500 per script per month for Tier 4 drugs. It is what I signed up for and what I pay for, but find so difficult to get.

Month #2 was only slightly improved. Lots of apologies from the insurance company, but the bottom line was that the only pharmacy they allow me to use can’t access my insurance information properly and insists on charging me several hundred dollars more. More phone calls… you know the drill.

Month #3 has arrived and I felt very hopeful. An insurance company customer service representative actually contacted me first. She wanted to assure me that they would expedite this month’s refill, while making it as easy on me as possible. She told me that she was going to contact the pharmacy immediately and override the system. All I needed to do was call the pharmacy and give them the okay to ship. I thanked her profusely and happily hung up the phone. At least this month I won’t have to beg for what is rightfully mine! Now we’re getting somewhere!

I waited two hours, giving them time to finish their task, and called the pharmacy. Voice mail. Wait… wait… wait. Finally, a human being. We went through the process, playing twenty questions, and then I inquired as to the charges. Uh oh. $280 over. The pharmacy claimed that they have not gotten a phone call from my insurance company since last month’s fiasco. Great.

So, back on the phone to the insurance company. Voice mail system. Wait… wait… wait. I asked for the customer service rep who called me earlier and ended up in yet another voice mail system. I called back and asked for the rep I spoke to last month and, naturally, got voice mail.

Now into Friday evening, I guess I will face the hassle on Monday. Deep breaths, and I shall try not to loose my grip.

Oh, what a pleasure it would be to inform the insurance company that they do not meet my standards and I will bring my business elsewhere! Oh, yeah. I can’t. This is the only insurance company in my state that will give me any coverage at all… and only because it is required to by state law.

Equally wonderful would be the opportunity to choose another pharmacy, one whose representatives treat me with dignity and must court my business. But, again, this is the one and only pharmacy I am allowed to deal with.

It’s a great system we’ve got here.

Last month, I wrote a post about the difficulty I had in securing my multiple sclerosis medications through my new insurance company. After that horrendous experience, they cautioned me that things may not be easier next time. Well, they got that right.

Month number two with new insurance proved every bit as frustrating. I have no choice in pharmacy for these precious injectable drugs. Insurance company allows but one, and they are an unpleasant group at best. They still wanted to charge me more than my maximum monthly out-of-pocket. Interestingly, they wanted to charge even more than the previous month.

Not receiving the promised return phone call, I had to brave the voice mail system once again to speak to a customer service rep. Both she and her supervisor, insisted that I was wrong… that it is entirely my problem… that they would not contact my insurance company to straighten this problem out.

A series of frustrating calls… and days later, my meds were ordered up at the correct co-pay. When I asked the representative from my insurance company if this would be rectified before next month’s supply is needed, I was told that no, it probably would not. So sorry, and all that…

So, next month we get to play this game all over again. First shell out $1,100.00 per month — minimum — then fight, plead and beg to get your much-needed medications. Ain’t it grand?

How many times have we been given the advice from doctors, friends, and even strangers, that we must learn to reduce stress so as not to aggravate our MS?

To all those well-meaning folks out there, the reality is this. If you have a major health condition such as MS, and you do not have access to group health insurance, you are in for a world of stress.