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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.
"It’s your own damn fault that you’ve got MS. Not only are you fat and lazy, but you’re probably faking it anyway."
It’s not likely you’ll hear anyone put it quite so bluntly, but all too many MSers get exactly that message in a different wrapper from their oh-so-concerned loved ones, or from the latest TV show about the dynamic personality who has "overcome her illness" with the help of prayer, a sunny disposition, regular participation in the Boston Marathon and weekly espresso injections.
Guilt and its mongering take many forms, and some of them are truly insidious. We’re a fairly sophisticated society these days – or at least we think we are -- so you don’t hear too many preachers ranting about MS being God’s judgment on a misspent life. That particular tactic is reserved for AIDS and other illnesses that strike at people who, in the eyes of some, have it coming. So let’s thank the Deity for small favors: MS isn’t sexually transmitted, passed through IV drug use or disproportionately found among liberal atheists. At least we can listen to talk radio without fear.
But that doesn’t necessarily keep the other forms of guilt tripping at bay. My personal favorite is "stress." Tell someone you’ve got MS and it won’t be long until you’re asked about your divorce, whether you work too hard (as if you had a choice), whether you were ever cut out to be a mother or whether your granddad’s death was the final straw. This invariably will be coupled with heartfelt advice to "avoid stress" from now on.
Sounds reasonable, doesn’t it? Everywhere we look, we’re told that stress causes illness. MS is a really bad illness, so there must have been a lot lotta shakin’ going on. Yep, the stress did it. Must be.
What’s usually left unsaid, but clearly implied, is that if you’d only avoided that stress you wouldn’t be in this boat. Ergo, it’s your own damn fault. And if your MS should happen to progress – as it usually does, incidentally – well then it must be because you insufficiently avoided stress. Not that the implicit guilt trip adds to anyone’s stress. Moi? Why, I was only trying to help!
A kissing cousin of the stress rap is the positive attitude mantra. Be of good cheer! Look on the bright side. Visualize your happiness. Rise above your limitations. Translation: You’re bringing it on yourself, and oh by the way, I really don’t want to hear about your troubles. They’re too depressing.
Like all mythology, there’s a grain of truth in all of this. Someone who burns the candle at both ends is probably going to have more trouble with her MS symptoms than someone who gets eight hours of sleep. And there’s a fine line between candor and playing the sick role like a fiddle to put everyone at your beck and call. That said, stress doesn’t cause MS. Smiles, be they forced or genuine, won’t cure it. The author of Laughter Is The Best Medicine is dead. He is buried next to a lifelong curmudgeon. What's even worse is that we're all going to die.
My best friend’s sister has MS and she doesn’t let it get to her. She even jogs five miles a day. She says exercise is her cure. In other words, you’re malingering. The kind souls who deliver this message – too many of whom are entertainers eager to base their otherwise declining careers on being poster children for this or that disease – have never stopped to consider that MS is a highly variable illness. Oh, by the way, the "best friend’s sister" has a mild case of MS. Good for her, but plenty of other people have it bad.
Denial has another face: The unsolicited testimonials for the latest miracle therapy. Someone’s brother drinks a quart of flaxseed oil every week. A co-worker gulps down a special juice drink with a chaser of 10W30 motor oil. Did you read about that new drug that’s going to cure it? I ran into a guy at my high school reunion whose wife buys bees from Kansas and has them sting her every other day. He says she started walking again. I can give you her phone number if you want it.
What’s really going on here is a mixture of squeamishness and fear. We might regard ourselves as sophisticated, but human beings are afraid to die and a lot of people lash out at anything, including disability, that reminds them of their mortality. Every culture expresses it differently, and in America it’s seen through a relentless focus on "curing" or "overcoming" disease and handicaps. And we are tinkerers to the Nth degree. I made this in my basement. Try it! What have you got to lose?
There's a whole lot of good in these impulses, by the way. Let’s all hope someone devises an MS cure, and if winds up being a specially brewed beer delivered via an enema tube I’ll be first in line. But for now, we have a disease whose cause is unknown, whose effects are maddeningly unpredictable and that has no cure. In other words, we have a chronic illness. Americans are terrified of the chronic. It reminds us of welfare. We want to fix our problems, and if we can’t fix them, we can get pretty weird about it.
For those who don’t have MS but are reading this perhaps because a loved one or friend does, I have some friendly advice by way of Bob Dylan:
Take care of all of your memories, said Nick
For you cannot relive them
And remember when you're out there tryin' to heal the sick
That you must always first forgive them.
So quit the guilt trips. No one knows what causes MS, so we really don’t need or appreciate any amateur psychoanalysis about our sources of stress. There’s no cure, so don’t tell us about the "detoxification" program you read about in some magazine or how a positive attitude can make an illness disappear.
We’ve got our good days and our bad days. On our good days, greet the day with us. On our bad days, put up with us and maybe offer to do the grocery shopping or something else that might be useful. Above all, just be there. Notwithstanding everything I’ve written up to this point, don’t kill yourself if you say the wrong thing every now and then. We’ll get over it. No one’s perfect. Really.
To MSers, some friendly advice. Don’t buy into any of those guilt trips. If someone tries to lay one on you, try to be gentle. These are usually teachable moments. Most people say the wrong thing because they don’t what else to say. Just tell ‘em that no one knows what causes MS and no one has found a cure. You’re doing the best you can, and that’s going to have to be good enough.
If someone asks how you’re feeling and the truth is "not too good," then say so. Briefly. If you need help ask for it, and when you get it say thanks. If you need a cane or a scooter, use one. If you need some rest, lie down and have a nap. Above all, if you want to have a steak, a dish of ice cream and (horror of horrors) a cigarette or two after you’re finished, don’t let anyone or anything stop you.
It’s not your fault!
I was diagnosed with MS in the summer of 2002, at the age of 44. My diagnosis was made after several neurological exams, a series of MRIs and a spinal tap. MS is often misdiagnosed or ignored in the early stages. This was the case with me. In 1991, I went numb up to my chest and the doctors couldn't find anything wrong. I was tired throughout the '90s but attributed it to my intense work and travel schedule. Then in 2002 all hell broke loose -- paralysis, loss of bladder control and weird cognitive disturbances like not being able to add and subtract.
Finally, I went Aha! I bet I know what this is. I called the neurologist I had seen in 1991 and said doc, I think I have multiple sclerosis. How did I know? Because one of my cousins has it and sometime in the late '90s we got to talking about his case and I thought to myself, Uh-oh. And then I tried to put it out of my mind.
The neurologist didn't remember me. He has been such a nice guy in 1991 but he was a total jerk now. It was really shocking. There I am, sitting in his office scared out of my mind and he literally snaps his fingers and tells me to hurry up with the talking. I could have punched his lights out or started crying but instead I held it in because I knew I needed this guy. He did all the lab workups and lo and behold that's what I had. Then I found another neurologist who wasn't a total dick. Neurologists are some of the oddest ducks in all of medicine is all I can say. When I saw the second guy and told him about the first guy it was all I could do to keep from scraping him off the ceiling.
I said, Doc, doc it's not about the other guy and what an asshole he is, it's about me. Finally he said yeah you're right. Now let's get you on Avonex, one of four drugs that have been approved to treat the disease. This involves giving myself a shot once a week with a needle that looks like it will go all the way to China.
MS is a funny disease. Not funny ha-ha but funny unusual. Think of a tornado that skips through a town. Every tornado worthy of the name takes out the trailer park, but from there you don't know what the hell will happen. Some of them get the church, one tavern and the school house, and others get the police station two gas stations and the stop sign at the corner of 3rd and Main.
The trailer park is usually stuff like optic neuritis (weird visual symptoms including deep eye pain that's really excruciating), walking disturbances, memory problems, heavy fatigue and numbness. Most MSers have those things to some degree. The memory stuff, by the way, is a newly recognized symptom. Used to be that it was all about the walking, but now they seem to know better.
Past those things, it can be anything. And why not when you really think about it. I mean, MS is when your body eats the covering ("myelin") off of your nerves. It's like cockroaches eating the insulation off the wires in your house. The same thing happens in each case: You get short circuits, and they're totally unpredictable.
One of my favorite short-circuits is with math. I suddenly couldn't figure out how much of a tip to leave at the restaurant. Okay, I know it's 15%-20% but the calculation is the issue. I used to be a financial analyst for crying out loud, but now I couldn't figure out 20% of $225? Come on, what gives? I still remember talking to a guy one day and telling him that 9 times 7 = eighty-something. As I sit here and write, I don't know what 9 times 7 is.
No great tragedy I guess, but it's a little weird when you're a financial analyst and your work depends on you knowing what 9 times 7 is. And it's a little humbling. Almost as humbling as discovering that you've voided your bladder all over yourself and didn't know it. Did you know that The Wall Street Journal makes a suitable coverup when you're trying to get out of the office in your piss-stained suit?
So anyway, back in '02 when I got diagnosed I took a deep breath and said I can't work. Time to dust off the disability insurance policies and see what's inside. Turned out that I should be in the Guiness Book of World Records as the only American to ever have his insurance coverage substantially improved without his knowledge or consent. The coverage was excellent. All I needed to do was document the hell out of my case and file for benefits.
Since then, my partner Don and I moved from Boston to Seattle. We had been together since 1986 and for a while we had lived in Seattle until the firm I worked for sold to another company and I was tossed out of my job. This meant finding a different job and moving to Boston, but when we did that I managed to keep the house in Seattle and rent it out. We had always wanted to return here, but didn't think it would be so soon.
We got back to Seattle in late 2003, and soon Don's health took a drastic turn for the worse. On Sept. 22, 2004, he died of the combined effects of AIDS and chronic alcoholism. I have been on my own since then, but I'm hanging in there, full of piss and vinegar as always. I think my curmugeonhood is what keeps me going. I had one boss who told me that a different boss had been scared of me because he never knew what I'd say next. Yet a different boss said I was known for not suffering fools gladly.
All of those things are true but chronic illness and the death of one's longstanding partner, who I loved with all my heart, will soften even my roughest edges. Life is different these days, and in some ways it's better than it ever was. But there'll be more to say about that later on.
Addendum
In 2006-2007, I found another partner. We live together in Seattle with our three dogs. We are one big, happy herd. In some ways he's very different than I am, but in the most important ways our hearts beat together as one. Besides, if someone wasn't different then you'd be in love with the guy in the mirror, and how boring would that be? Plus, he makes me laugh at myself, and God knows I need to!
