Tuesday, March 4, 2008

A Multiplicity of MiS-Simplification

Remember how March is National MS Education and Awareness Month?

Well The New York Times has jumped onboard with a short series of articles written about multiple sclerosis by their very own "personal health columnist and science news reporter." Ms. Jane E. Brody writes weekly articles for NYT and is considered a leading authority on 'health & nutrition' and 'health & fitness' on the speaking circuit.

"For a recent birthday, Jane Brody received a T-shirt that proclaimed, "Still Perfect-After All These Years!" After she stopped laughing, she began to realize that it really should have said, "Still Trying-After All Those Years!" Indeed, Jane Brody has been trying to be good to her body and to show millions of people around the world how to be good to theirs. She is The New York Times' personal health columnist and is the author of seven popular books: Secrets of Good Health, You Can Fight Cancer and Win, Jane Brody's Nutrition Book, Jane Brody's The New York Times Guide to Personal Health, Jane Brody's Food Book, Jane Brody's Good Food Gourmet, Jane Brody's Good Seafood Book, and Jane Brody's Cold and Flu Fighter. Sought after as a speaker and commentator, Brody lectures frequently and has appeared on hundreds of radio and television shows."
Okay, so Ms. Brody is consider an authority on health issues. But how does that make her an expert on multiple sclerosis? In short, it doesn't. But considering that she is a professional journalist, I would have expected more from today's article in the NYT Health column.

Excerpts from the National Multiple Sclerosis Society website are quoted and emphasized below.

"From Multiple Sclerosis, a Multiplicity of Challenges"
Published: March 4, 2008

When it comes to understanding, preventing and treating chronic diseases, multiple sclerosis ranks among the most challenging. The word “multiple” is apt in more ways than one.

Various suggested causes include early-life exposure to certain viruses or toxic agents, geographic and dietary influences, inherent immunological defects and underlying genetic susceptibilities.

While the exact cause of MS is unknown, most researchers believe that the damage to myelin results from an abnormal response by the body’s immune system. Normally, the immune system defends the body against foreign invaders such as viruses or bacteria. In autoimmune diseases, the body attacks its own tissue. It is believed that MS is an autoimmune disease. In the case of MS, myelin is attacked. Scientists do not yet know what triggers the immune system to do this. Most agree that several factors are involved, including: Genetics, Gender, Environmental Triggers [Possibilities include viruses, trauma, and heavy metals (toxicology)]

Dietary influences might cause multiple sclerosis? Really?

MS is highly unpredictable. Rarely are any two patients alike in the presentation, duration and progression of symptoms; even the underlying cause of disability in MS is being reconsidered. And rarely do any two patients respond in the same way to a given therapy, be it medically established or alternative. Trial and error is the name of the game, experts say, because it is often not possible to know in advance what will work best for individual patients.

Symptoms of MS are unpredictable and vary from person to person and from time to time in the same person. For example, one person may experience abnormal fatigue, while another might have severe vision problems. A person with MS could have loss of balance and muscle coordination making walking difficult; another person with MS could have slurred speech, tremors, stiffness, and bladder problems. While some symptoms will come and go over the course of the disease, others may be more lasting.

Although there is still no cure for MS, there are various strategies available to modify the disease course, treat exacerbations, manage symptoms, and improve function and safety. In combination, these treatments enhance the quality of life for people living with MS.

Because MS is so variable from one person to another, and for any one person over time, each individual's treatment needs are best identified in an ongoing collaboration with a knowledgeable physician and other members of the treatment team.

These are the frequent underpinnings of confusion and distrust among those afflicted and their families. They sometimes give rise to claims that the organizations raising large amounts of money to support research and patient services and the scientists studying the disease have no intention of finding a cure, lest it put them out of business. It is a ridiculous notion on its face, since many of those involved in fund-raising and research have watched loved ones suffer and succumb to diseases like MS.

Wait a minute? How does the unpredictible nature and the vast unknowns of living with multiple sclerosis create "distrust among those afflicted and their families." Really?

In my personal experience living with MS and in communicating with others who also live with MS, I'm confident in stating that patients are rarely distrustful of their 'treatment team' and much more likely to be distrustful of the pharmaceutical industry which is continuing to enjoy blockbuster status with their MS disease-modifying drugs.

The failure of the medical establishment to solve mysteries like MS also prompts many patients to seek alternative remedies suggested by friends and relatives or found on the Internet. Many of these remedies are harmless, and some may actually be helpful, at least for a time. But when the remedies keep patients from trying the best that modern medicine can offer — or when they interact negatively with established remedies — the result can be a far more rapid downhill course than might otherwise have occurred.

Alternative medicine includes everything from drugs and diet to food supplements, mental exercises, and lifestyle changes. These therapies come from many different disciplines and traditions.

"...the result can be a far more rapid downhill course than might otherwise have occurred." Really?

Can you hear the pharma guys saying - absolutely, no doubt, without drugs you will go downhill rapidly - mouhaha?

The goal, then, for those considering alternative treatments is to make them complementary to, not competitive with, therapies that have passed muster in well-designed clinical trials.

"...passed muster in well-designed clinical trials."

I wonder if Ms. Brody even looked up the estimated effectiveness of each of the disease-modifying drugs available to us MS patients. I kinda doubt it, primarily due to a particular misspelling found below.

Oh, and for the record, I DO make use of one of the six approved disease-modifying drugs available. So I am NOT anti-drug.

“People have only one brain and one spinal cord, and what everyone with MS should be doing is optimizing treatment options every single day,” said Dr. Allen C. Bowling, a neurologist at the Rocky Mountain MS Center and author of “Complementary and Alternative Medicine and Multiple Sclerosis.” “Every patient should play the chips for which we have the best evidence. They should take advantage of what conventional medicine has to offer along with unconventional medicine,” as long as the latter does not interfere with the former.

Coincidentally, Dr. Bowling's book is now available in a revised 2nd Edition (2007).

Complementary and Alternative Medicine and Multiple Sclerosis, 2nd Edition is completely updated throughout, and reflects the advances in the field since the first edition’s publication in 2001. There is a new chapter on low-dose
Naltrexone and a pivotal section on integrating conventional and alternative medicines.
Treatment Options

Multiple sclerosis is an inflammatory autoimmune disease of the central nervous system in which the body’s own immune system attacks the myelin sheath that insulates nerves in the brain and spinal cord, resulting in irreversible damage to the axons that transmit nervous-system signals. About 400,000 people in the United States are affected, twice as many women as men.

MS is typically diagnosed between ages 20 and 40, but evidence indicates that it starts years before the first symptoms of weakness or disability appear. Even without a cure, many treatments are available — like drugs, physical and occupational therapy, exercise and rest — that can ease symptoms and delay the disease’s progression.

Anyone may develop MS, but there are some patterns.

  • Most people with MS are diagnosed between the ages of 20 and 50.
  • Twice as many women as men have MS.
  • Studies indicate that genetic factors make certain individuals more susceptible than others, but there is no evidence that MS is directly inherited.
  • MS occurs more commonly among people with northern European ancestry, but people of African, Asian, and Hispanic backgrounds are not immune.

Approximately 400,000 Americans acknowledge having MS, and every week about 200 people are diagnosed. Worldwide, MS may affect 2.5 million individuals.

In most patients, the disease starts out, and may stay indefinitely, in a relapsing-remitting form that results in gradual progressive disability but is rarely life-threatening. In about 10 percent of patients, the disease is progressive from the outset and life expectancy is reduced.

The goal of therapy is to prevent relapses and the worsening of symptoms. Since symptoms can disappear on their own, large, long-term, scientifically controlled clinical trials are needed to determine what works and what only seems to work initially. Trials are also needed to uncover potentially serious side effects.

Although there is still no cure for MS, there are various strategies available to modify the disease course, treat exacerbations, manage symptoms, and improve function and safety. In combination, these treatments enhance the quality of
life for people living with MS.

"...large, long-term, scientifically controlled clinical trials are needed to determine what works and what only seems to work initially."

Sounds to me like someone is laying the foundation for explaining long, drawn-out, EXPENSIVE clinical trials to study drugs which are already being used to address MS symptoms. Hummm...

Such trials have identified half a dozen substances called immune modulators, five of which have been approved by the Food and Drug Administration (FDA) as disease-modifying agents. These are Avonex, Betaseron, Copaxane, Novantrone and Rebif.

Copaxone is the correct spelling. (I know this because its the drug I use.) But don't forget Tysabri which is disease-modifying drug #6 - oh wait, it gets it's own paragraph down below.
In her book “Multiple Sclerosis: An Essential Guide for the Newly Diagnosed,” Margaret Blackstone, a medical writer and MS patient, describes Avonex, Betaseron and Rebif as interferon-based treatments administered by injection that seek to calm an overactive immune system. Copaxane, also taken by injection, is an antigen that fools the body into thinking it is the protein in myelin. It is meant to protect the myelin from an immunological attack. Novantrone is an immunosuppressive cancer drug used to treat progressive MS.

Oh, I get it - a substantial amount of Ms. Brody's research came from Ms. Blackstone's book which is basically 5 years old, although it is in a 2nd Edition paperback (2007). I read “Multiple Sclerosis: An Essential Guide for the Newly Diagnosed” and found it to provide a useful, but simplistic, foundation for understanding the basics of living with MS.
A sixth drug, Tysabri, a monoclonal antibody that prevents immune cells from entering the brain, is given intravenously every four weeks. Tysabri was removed from the market in 2004 because of serious complications in three patients. It is now back in clinical trials and available through a special program to those who had found it to be the best treatment for their disease, but last week its makers posted a warning to doctors that it has been found to cause serious liver damage in some patients.

"...available through a special program to those who HAD FOUND it to be the best treatment for their disease..."

This implies that only those patients who were part of the earlier trials are using Tysabri. This is not the case and Tysabri is no longer restricted to those patients who have failed each of the other disease-modifying drugs.
Therapy and Alternatives

Up to 20 percent of patients have a relatively mild form of MS and may not need drug treatment, but it is impossible to predict who they are. Dr. Bowling emphasized the importance of not waiting until neurological defects appear, since they cannot be reversed by any known therapy. He also said that therapies should be tailored to the nature of each patient’s disease and the known activity of the various drugs.

It is currently believed that Tysabri may be contributing to the reversal of neurological damage and the regeneration of myelin in some patients.
Ms. Blackstone states it is important for patients to recognize an impending relapse — common indicators are fatigue and “a heightened sense of vulnerability, as if the person can tell something bad is going to happen” — and not try to work through a relapse. “It’s better to rest” and “avoid engaging in strenuous activity,” she suggests.

This is misleading and inaccurate. Fatigue is not simply a "common indicator" for an impending relapse - it is one of the most common (if not THE most common) symptom of MS. But in any case, rest is a good thing for those with MS to regularly make time.
If relapse symptoms warrant, corticosteroids can be used to speed recovery and possibly to delay or prevent another relapse. The other critically important aspect of therapy involves managing symptoms. Depending upon the stage and severity of the disease, symptoms may include fatigue, dizziness, vision changes, spasticity, weakness, tremor, numbness, balance problems, pain, depression, constipation and speech difficulties. In more advanced disease, sexual problems and incontinence are common.

An exacerbation may be mild or may significantly interfere with the individual's daily life. Exacerbations usually last from several days to several weeks, although they may extend into months. It is generally accepted that a short course of corticosteroids will cause an exacerbation to be shorter and/or less severe.
Measures may be taken to reduce disability from these symptoms, like physical, occupational and speech therapy and psychotherapy; avoiding heat; getting adequate rest; and learning to listen to one’s limitations.

Disability does not come from MS symptoms. It comes from
disease-activity and further damage. And by the way, sexual problems is listed as one of the most common MS symptoms on the NMSS website.
At one point or another, most MS patients also seek out, and often benefit from, complementary and alternative medicine, like acupuncture, dietary supplements, biofeedback, meditation, guided imagery, tai chi, cooling therapy, yoga, therapeutic touch and electromagnetic therapy. In his book, Dr. Bowling describes what is known about each of these possible adjuncts to medically established treatments, some of which can be counterproductive or negate the benefits of medication.

It's great that The New York Times desires to address the unique issues related to MS, especially during this special month. But this article left a strange taste in my mouth. oops - maybe I've got a relapse coming on? Just kidding and knock on wood.
This is the first of two columns on multiple sclerosis. Next week: Could a special diet for MS patients be worth trying?

So next week we get to benefit from Ms. Brody's vast knowledge and research of multiple sclerosis. I'll be curious to see what she writes next.

So stay tuned and I'll let you know when I know.

For clarification, the excerpts in italics are from the National Multiple Sclerosis Association's website. The bold quotes are from the NYT article. And the rest comes directly from me.

In conclusion, I basically expected more from The New York Times. Too bad.


  1. Great post. I so agree with you. I would have expected more as well.

    I'm using Copaxone now and I'm longing to stop. Are the injections difficult for you? They're very painful for me and now I have tissue breakdown in both of my arms which have left "dents" in my triceps. :^/

    Thanks for your visist and for your comment. No matter what else is going on with me, relapse or not, love and laughter are the best medicines for me. They may not do much for the body but are great for my soul. As long as I keep my heart and soul healthy, I have a fighting chance I think.

    Have a great week.

  2. Thanks so much for stopping by Friday. Love and laughter = medicine for the soul = absolutely!!

    Re: Copaxone injections
    I have never used my arms as I thought it might be too painful and I need my arms for my music. I've gone to manual injections in the places I can reach and only use the auto-ject if I'm aiming for my bum or saddlebags.

    BTW, that little fat pad found on the outside of the thighs (saddlebags) is very useful, as is the fat beneath the navel. These are my favorite places to inject.

    I haven't begun to experience the tissue breakdown yet in any injection area. But I do notice that the lumps last much longer on the top of my thighs...maybe cause there is relatively less fat in this area?

    Doing manual injections after a warm shower have seemed to help limit discomfort. AND never inject cold syringes!!! OUCH! I use the blue 5-day container to keep my syringes in the bathroom for the week. Just makes it easier for me.

    Hope some of this helps.

  3. Just a few years ago I would have expected much more from publications such as NYT. I expect less these days. Sad, but true. I suppose that's why bloggers feel compelled to fill in the gaps.

    MS has GOT to be one of the least understood neurological diseases, but it doesn't seem to have that certain "press appeal".

    Keep doing what you do best -- keep the powers that be on their toes!

  4. Lisa,

    I have time to visit everyone today and I must say you stumbled on a good one.


    I hope you do not mind me jumping in on your question to Lisa. I have been tempted to stop Copaxone, but because of my MRI's showing no progression, I continue to take the daily shots.

    The best advice is if you discover a part of your body that can no longer take the injection or you cannot tolerate the injection...do not shoot yourself there again. I had an experience last week, I will be blogging about when I get the time, and you might find it interesting.

  5. Hi there,
    I would LOVE it if you used my post in the carnival. I had no clue there WAS a carnival!

    BTW, I will jump on the bandwagon about the Copaxone. In 10 months time, there are NO new lesions in my brain, and there are actually decreased lesions in white matter. I think that may be common in the beginning? Either way I was glad to hear it.

    I had been getting really sick of Copaxone until now....I am getting horrifying bruising from the injections, especially on the back of my arms. I have 4 bruises right now on each, so that is a month's worth. UGH!!! My dr. said to use a warm compress before and after. We shall see.....

    Thanks for your comment!


  6. I meant to mention, I do manual injections as well. Once after using the autoject for awhile, it shattered inside! I was so freaked out that it malfunctioned like that I never used it again. LOL How weird.

  7. I take Avonex and so far, I am staying with it. Thanks for sharing and making me think.

    This was deep.

  8. Thank you for this, funny enough, my doctor just sent me this e-mail with this exact article to look at. Its nice to see your perspective on this, I appreciate it.

  9. Hi there - first visit as a result of the blog carnival, so thanks for that!

    Dietary influences causing MS...I understand there's quite a lot of epidemiological evidence suggesting that a society's consumption of fish is related to its MS rates. Therefore although the Inuit society (for instance) is high-latitude, it has low MS rates. Apparently Japan had low MS rates until many of its population started moving over to a more Western diet...and now MS is becoming more prevalent. Nothing proved of course, but it's interesting.

    Margo x

  10. I just discovered this blog. I'm "frequently" interviewed by journalists and in all fairness, they have to consume a lot of information in a short time -- and often don't get it right due to deadlines. Which is why bloggers are so valuable. We can keep it all "honest".

    I don't quite agree that MS is the "least understood" -- it certainly gets the lionshare of research dollars among AD diseases. It's just that autoimmune diseases are so poorly understood... and most of the research dollars goes to treatment - rather than cure.

    Avonex has put me into remission - but I know that it's random. We all just have to figure out what works for us. (For me it's always been continuing to work that keeps me "healthy") Glad to have found this site.

    Rosalind aka cicoach.com