The most sobering sentence? “These critics warn that multiple sclerosis has unpredictable attacks and remissions that make it devilishly hard to know whether treatments are working — leaving patients vulnerable to purported ‘cures’ that do not work.”

I hang on to hope with the resignation of a skeptic and await solid science.

After drug testing and before the FDA approves a new medication, a panel of health experts considers the drug studies and, if the panel is satisfied, recommends approval to the FDA for approval. The FDA usually does as the panel suggests.

The panel reviewing Gilenia recommends it as safe and effective for controlling tremors, concentration problems and other symptoms of relapsing remitting MS.

If the medication’s side effects do not derail the FDA’s approval later this year, Gilenia will be a welcomed medication for MS patients because it is the first MS treatment available in pill form. Approval would mean no more routine injections or infusions for those who take it — no more needles or injection site reactions.

Reported side effects of Gilenia include eye disorders, heart problems and lung problems. In spite of these, the panel recommend approval of the drug for the treatment of Multiple Sclerosis.

With each medication they choose to take, MS patients are faced with the persistent question, “Will my MS treatment be worse for me than the long term effects of the disease?” Because this is a new medication, there really isn’t an answer to this question yet. Not enough people have taken it for enough time for researchers to know the long term effects.

In light of the side effects, the panel did recommend Novartis study the effectiveness of lower doses of Gilenia.

More information about Gilenia:

• "First pill for multiple sclerosis safe, effective"
• "Novartis Gains After FDA Panel Backs First MS Pill"
• Novartis.com
• "FDA advisory committee unanimously recommends approval of Novartis investigational treatment FTY720 to treat relapsing remitting MS"

“Multiple Sclerosis: a journey through time” is an audiovisual tour of the history of multiple sclerosis. Available in English and German, the online presentation is offered by the German MS Society, Deutsche Multiple Sklerose Gesellschaft (DMSG) and AMSEL Association, a self-help and advocacy organization for MS patients in Baden-Wuerttemberg.

The History of MS gives viewers an excellent overview of the history of this neurological disease beginning in 1395 AD. It’s a very useful educational tool. For example, I didn’t know lumbar punctures have been used for diagnostic purposes since 1913 or that 1972 brought the use of visually evoked potentials to measure the speed of optic nerve conduction as a diagnostic tool for Multiple Sclerosis.

But even more than an educational tool, The History of MS offers viewers a broad perspective. And broader perspectives are important for caregivers.

First, a broad perspective puts your personal situation into a context. It’s easy for some caregivers to feel alone. Others, overwhelmed by the newness of a diagnosis, are confused and without foundation – especially if all they know about MS is the little that most people who are untouched by it know.

Second, because one hears, “there is no cure for Multiple Sclerosis”, the history of medical research is heartening. There is no cure now. But perhaps a cure will be discovered.

Third, having one’s perspective broadened opens one up to experience hope. I’ve considered many times that even if a cure is discovered, it still will not restore the lost neurological functioning. If my wife has lost the ability to walk or swallow, having a cure for MS will only stop those symptoms from worsening. But The History of MS projects into the future, too. It is not unreasonable to think that medical research will, as the presentation offers for 2020, discover a way to repair myelin.

Will myelin repair happen? No one knows. Could it happen? Again, no one knows, but that scientists are imagining it, gives me significant hope!

Website: The History of Multiple Sclerosis

The authors, Barbara Kantrowitz and Pat Wingert, are reporting on an article in the November 2009 issue of Cancer, titled, “Gender disparity in the rate of partner abandonment in patients with serious medical illness“. Of course, the research article’s abstract begins by stating the obvious, “Life-threatening illness creates severe stress that may result in marital discord, separation, or divorce and may adversely impact treatment, quality of life, and survival.”

While the Newsweek summary of the findings focuses on couples where one partner has cancer, the original study is of 515 patients: 214 have a malignant brain tumor, 193 have a serious brain tumor with no nervous system involvement and 108 have multiple sclerosis. All were married at the time of diagnosis.

Because Newsweek has summarized the finding of the Cancer article, I’ll not do that again here. I’ll merely point out the obvious: caring for a spouse who has a severe illness is stressful and disrupts marital relationships. Unless one marries a partner who has already been diagnosed, it may be impossible to understand the implications for one’s future which is contained in the small phrase, “in sickness and in health”.

I may comment on this study again in the future because I think it describes a phenomenon that is so very important for multiple sclerosis caregivers to appreciate. And because I know it is possible to build a stronger marriage – even as the chaotic effects of Multiple Sclerosis bang against your marital relationship.

And as fascinating and accessible as the Newsweek article may be, the readers comments to the Newsweek article are worth studying all by themselves. People have a lot of emotion about the issue of spouse abandonment: http://www.newsweek.com/id/223079/output/comments

If you know someone with Multiple Sclerosis, you’ll want to read the newsletter, too, and learn about the CCSVI research that is being done at the Buffalo Neuroimaging Analysis Center. (I’ll offer a link to the newsletter at the bottom of this post.)

The tears weren’t because the article described a brilliant research technique or procedure. Although, the research is incredibly significant. Nor were the tears because of fancy wordsmithing on the part of the author.

A simple thing happened.

As I read the article about CCSVI, I felt the feather-light touch of potential hope. My heart swelled and my brain shouted, “I want my wife healed!” And my eyes dripped with the hope.

Then, of course, there’s reality. It’s still too early to know whether CCSVI causes MS. Nor does anyone know yet what the best treatment will be if CCSVI is determined to be the cause.

While the research continues, here’s what I do know.

I know I hate that she self-administers injections without any obvious return. I hate that she’s more miserable when she takes the treatments hoping to forestall future decline, than when she doesn’t and risks accelerated decline.

I hate that she has trouble walking and can’t run, that words don’t pop out quickly the way they once did. I hate that she has no stamina and that she takes medicines without immediate reward. I hate that she wakes most days with intense headaches. I hate that she can never go as far she wants for as long as she wants.

I hate Multiple Sclerosis. I flat-out, passionately hate it.

And so with tears behind my eyes, I pray the researchers exploring CCSVI are close to finding answers to questions about the cause. And I pray real, effective treatments will follow.

I’m waiting with tears behind my eyes.

Newsletter link (PDF File): Buffalo Neuroimaging Analysis Center CCSVI Newsletter

“Chronic Cerebrospinal Venous Insufficiency” is the name given by Dr. Paolo Zamboni to the backward flow of blood into the brain due to constricted veins which should drain blood from the brain. Dr. Zamboni is the Director of the Vascular Diseases Center at the University of Ferrara in Italy.

It’s too early to know whether CCSVI will be found to cause Multiple Sclerosis, but researchers are focusing their attention on it.

A good introduction to CCSVI is found in today’s BuffaloNews.com in an article titled, “Study could hold key to MS treatment“. Dr. Robert Zivaidinov is the Director of the Buffalo Neuroimaging Analysis Center and the principal investigator of the first major study of Dr. Zamboni’s controversial new theory that blockage in the veins that drain the brain cause Multiple Sclerosis.

Dr. Zamboni’s theory is controversial because it stands against the current assumption that MS is an autoimmune disease. The treatment of choice if Zamboni is correct is apparently angioplasty of the brain veins. This has been referred to as ‘liberation therapy’.

Important things to remember

First, while one is tempted to become excited about a potential cure for MS, I recommend against it. A lot of theories and potential treatments have been ruled out. Many more are currently being tested. If you had become excited about each, so far, you would have been disappointed by each.

Second, remember that a “cure” for MS will probably not undo the damage already done to the brain by Multiple Sclerosis … whatever the cause. “Cure” simply means an end to the disease process and progression.

Finally, if Dr. Zamboni’s hypothesis is found valid after further research, I imagine some pharmaceutical companies may have some explaining to do.

Here are links to additional information about CCSVI:

Study could hold key to MS treatment

New York researchers testing MS theory

MS Anger and Chronic Cerebrospinal Venous Insufficiency (with Video and Diagrams)

National MS Society Article with Questions and Answers