Monday, November 27, 2006

Advice to the Newly Diagnosed

Before talking about treatment, let me give you the best general advice I can muster:

  • Find doctors you trust and then listen to them. Sometimes you have to change doctors, but doctor-shopping is highly stressful and unproductive.
  • Get a neuropsychological evaluation. Have them do the full, eight-hour battery and make sure to keep a copy of the report. This will serve as a "baseline" against which future results can be compared. Neuropsych tests will strike you as really simple, even juvenile. But they are extremely revealing, and you'll want to get it repeated from time to time in the future.
  • Start a medical file. If you don't have one already, that is. Get copies of all records, reports, treatment notes and test results and of your MRI films and put them in a safe place.
  • MS is not a death sentence. It's absolutely o.k. and understandable to be shocked and worried, but you almost certainly have got a lot of good years ahead of you. Don't let this ruin your life. It is manageable.
  • Hang in there. Persistence matters more than just about anything else. Trust me on this: You get points in life for just showing up!

The ABCR drugs (so named because they consist of Avonex, Betaseron, Copaxone and Rebif) do not work 100% of the time. They have been well studied, and the results show that, in the aggregate, people who take one of them have fewer new lesions, exacerbations and progression than people who don't take them. But there is absolutely no guarantee that any of them will work for any particular individual. And they have various side effects depending on which one you take. Most people find one of the ABCRs whose side effects they can deal with.

Note: There is a fifth drug called Tysabri that was introduced by Biogen, the maker of Avonex, in late 2004. I didn't take it. I had two reasons. First, I was suspicious of the drug companies in general and doubtful of the FDA's independence. Second, I had read that this drug pierces the so-called blood-brain barrier, which separates your brain from the rest of your body. I was worried that there might be some nasty infections as a result.

Within a short time of that drug going into general use came the news of several deaths from bodily infections that had jumped the blood-brain barrier. Now Tysabri is off the market. But I don't feel vindicated. I feel sad about the whole thing. Maybe they'll do more work on the drug and find that it is safe in some instances. But until they do, I'm staying away from it.

There are various alternatives to the ABCRs, just about all of which get praised, scorned, promoted, denounced and debated. With the alternatives there is not only no guarantee of them working, there is also no evidence that they even work in the aggregate. Here are some good links to read about the alternatives:

So, when it comes to drugs you have the choice of whether or not to take an ABCR and whether or not to take an alternative. There's nothing that says you can't do both at the same time. With respect to alternatives, my personal opinion (and only that) is this:

  • Discuss it with your doctors. They can tell you whether an alternative will hurt you. Some of them are dangerous.
  • Stay off of bandwagons. Some alternatives are promoted with rhetoric about the big bad drug companies and the evils of Western medicine. This is a red flag that usually hides a scam. A double red flag is when a purveyor of an alternative suggests that you drop the standard treatment and use the alternative instead.
  • Don't pay a lot of money. Alternatives shouldn't cost too much.
  • Stay away from harmful substances. For example, if someone advises you to take mega-doses of a particular vitamin or mineral, you need to know whether it can do some harm. And forget about "secret formulas" of any kind, including "Chinese herbs." Some purported MS "cures" are nothing more the amphetamines or other psycho-active substances.
  • Keep your expectations in check. The facts are these: No one really knows what causes MS. Treatments are still hit-and-miss. No one can cure it. The drug companies are required to tell you this, but the purveyors of alternatives can and frequently do make outlandish claims.
  • Don't confuse virtue with treatment. You'll encounter a wide variety of quasi-religious approaches, ranging from ways to remove stress and bad karma, to the power of positive thinking, to radical diets that just happen to be benevolent to animals. Be a Buddhist or a vegan or a newly-minted saint if you want, but don't imagine that it will have any impact on the course of your MS.

I wish you the very, very best. People really care, and we all understand how scary it can be. Oh, and here's a great website for support and information to help you through it all.

1 comment:

Anonymous said...

You're so right, Willy.
Stay off the bandwagons of "alternative therapies", Chinese herbs and the like. The other day, a woman came into our office. After seeing the doctor, she commented on the nice music, the relaxing lighting, the sound of a fountain. She said, "Oh, we have so much in common." She left, and I went through her file. Advanced breast cancer. Alternative therapies, including herbs, sought instead of the original prescribed radiation. Chance of making it through. Almost zero.

No, she and I might like tinkly music and relaxing surrounding, but I would've known better than to get on that bandwagon of unproven science.