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"

“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

Today, the CBS News Early Show presented an interview with Edwin McClure, a young MS patient, who participated in a Northwestern University trail which involved using a patient’s own stem cells and chemotherapy. McClure’s family says he is “cured”. The researchers describe the trial as a treatment of symptoms. Either way, the results presented look very promising. This is definitely a study to keep our eyes on.

Here’s a link to information about the study on the ClinicalTrials.gov website: http://clinicaltrials.gov/ct2/show/NCT00273364

Driving home for lunch yesterday I caught just enough of Paul Harvey’s broadcast to hear something about Prozac, Multiple Sclerosis and reduced number of lesions on MRIs. I mentioned it to my wife when I arrived home and then searched the web for more information. (I started at PaulHarvey.com, but didn’t have time to relisten to the broadcast. It would be great if the broadcast transcripts were available on Mr. Harvey’s website – and maybe they are, but I couldn’t find them.)

Here’s what I found:

In Fluoxetine Show Promise in Multiple Sclerosis on the Medscape.com web site, the author describes the results of a small study which were presented at ECTRIMS 2007: 23rd Congress of the European Committee for Treatment and Research in Multiple Sclerosis. The article is dated October 16, 2007, so we’re not dealing with “new” news.

I think the reason Paul Harvey’s broadcast mentioned it is because the study is about to be printed in Journal of Neurology, Neurosurgery and Psychiatry.

The study conducted by Jop P. Mostert, MD, and his colleagues at the University of Groningen in the Netherlands, showed a reduction in new gadolinium-enhancing lesions in the study’s patients with relapsing-remitting or relapsing secondary progressive MS who received Fluoxetine (the generic name for Prozac).

Read the article for the study’s details or search the web for Prozac + “Multiple Sclerosis” for additional information.

Here are some of the reason I created the “Reasons for Hope” category for this article:

1. This study was not funded by any pharmaceutical firm. Funding wasn’t an influence.
2. Fluoxetine/Prozac has been around for a long time and is generally well-tolerated (unlike other MS treatments).
3. This isn’t a “new” new thing – Dr. Mostert’s report mentioned that, as early as 1991, psychiatrists were reporting that fluoxetine/Prozac was having a positive effect on MS patients.
4. A list of Multiple Sclerosis Drug Treatments indicates the medication is already prescribed to MS patients for “depression without anxiety“.  And, as mentioned in the study report, psychiatrists were reporting positive effects of Prozac on MS as early as 1991.

Remember, I’m not offering (nor am I qualified to offer) medical advice, merely reporting what I’ve heard on the radio and read of Mostert’s study. Talk about this with your neurologist.

Caregiver Tip: Do your own research on the impact of Prozac on MS and talk to your doctor. It may be something worth considering.

If you provide care for someone with MS, the chapters you want to read are Chapter 1, “What is Physical Medicine & Rehabilitation?” and Chapter 8, “Rehabilitation in Multiple Sclerosis”. These two chapters should be required reading for MS caregivers.

Chapter 1 clarifies definitions for a group of words we tend to use without discrimination: disease, impairment, disability and handicap. The distinction between disability and handicap is important. Disability is defined as a limitation of performing tasks, activities and roles to the expected level considered normal. Handicap is a lack of societal role fulfillment for an individual due to a disability. Examples of cases are provided which explain clearly how one can be physically disabled without being handicapped.

You may be thinking it odd that I’m intrigued by the difference between “disability” and “handicap”. Not having traveled down this road before, the distinction between the two is enlightening for me.

Chapter 8 is speaks directly to rehabilitation for MS patients. I’ll run through the headings: background, diagnosis, classification, treatment, rehabilitation in multiple sclerosis, impaired mobility and self care, spasticity, pain, cognitive function (“cognitive issues are one of the primary reasons that people with MS are medically retired“), bowel and bladder care, treating fatigue, depression in MS (“in a … survey of 739 patients with multiple sclerosis 41.8% were suffering from depression), and conclusion. Included in the chapter is The Expanded Disability Status Scale (EDSS) and a list of references.

“Clinical Practice of Physical Medicine & Rehabilitation” (PDF File) is now on the MSCaregiver.com list of recommended reading! (I’ll post the official reading list later …)

There is no cure for Multiple Sclerosis. There’s no magic mixture, no concoction, no gadget, no lotion, no bee sting, no poison, no gas, no deer antler velvet, no chemical, no diet and no organ removal that will cure MS. In fact, MS patients have been killed while participating in false cures.

Be wary of MS “cures”. Every few years, the International Federation of Multiple Sclerosis Societies’ Therapeutic Claims Committee analyzes more than 100 alleged “cures” and publishes the results in “Therapeutic Claims in Multiple Sclerosis”. No cure is known.

What are available are medications which modify the disease process, treat exacerbations and manage MS symptoms. Provided under the care of a neurologist or a physician who specializes in the treatment of MS and used in combination, these medications can enhance the quality of an MS patient’s life.

What do you do if a friend tells you of a new “cure” or you read about a weird-science treatment and are tempted to try it? First, avoid getting excited. You’ll be disappointed. Second, talk to your doctor about what you’ve heard or read. Third, visit Quackwatch and read Be Wary of Multiple Sclerosis ‘Cures’.

Caregiver Tip: Quackery kills. The desire for a cure can lead one to false hopes. Avoid Multiple Sclerosis Quackery and follow the treatment regimen prescribed by a neurologist or physician who specializes in MS.

I don’t know how to prove or disprove it, but I wonder if some of her migraines may be an indication of demyelination or myelin being damaged. Unfortunately, even if one knew demyelination were actively occurring there’s little that can be done to stop it. If one could stop it, I suppose we’d have to call that a cure?

And here’s what I wonder about a “cure”. If a cure is developed for MS, it would probably only mean the disease would be stopped. A whole different issue is then presented. Once the disease is halted, how does one replace myelin around demyelineated neurons? And, if one can “re-myelinate” a neuron, will the old neuron start sparking again?

It seems to me that curing a person of Multiple Sclerosis will require multiple cures; halting the disease and also restoring lost function to scarred nerve cells.