I'm not whining, but I thought I'd list some of my symptoms so that my friends and family can get some sense of the magnitude of what I am going through, and in case there are some newly diagnosed readers out there. You can read about possible symptoms in books or on web pages, but what I wanted to know in the early days after my diagnosis is how these symptoms go together. Do I take one from Column A and one from Column B, or do people experience them at random? Even identifying these symptoms was a problem in the beginning. I'd start with a "weird feeling" and not be able to pin it down. I'm trying to nail down a sensory problem, but the instruments with which I am doing the measuring (my sensory neurons) and the hardware with which I am trying to reason logically about the problem (my brain) are faulty. It's like trying to diagnose an intermittently faulty modem when your computer keeps crashing and the monitor cable has a short in it so the diagnostics don't show up on the screen so you can read them.

2001 Symptoms

• Weakness: Some muscles either won't turn on at all, or do so only partially. The muscles work just fine, but they're not getting the signal to turn on. I have some of these in my legs and neck.
• Spasticity: Some muscle groups either won't turn off at all, or do so only partially. The muscles work just fine, but they're not getting the signal to turn off. I have some of these in my legs, arms, and back. The combination of weakness and spasticity can make walking a challenge some days, but at least I can still walk. Sometimes I need a cane, and sometimes I can fake being perfectly normal. Some of my muscles are real buff, I'm getting great definition, but they tend to ache after a few days. (Here I am using understatement again. It's a habit that I picked up in Australia, where it is something of a national pastime. I remember sheltering on the verandah of a pub during a torrential downpour - the type you can get in Queensland where it rains 8 inches in an hour and the rain is coming down so hard that it bounces up to waist height off the concrete - when a man runs across the street and up onto the verandah. He looks like a drowned rat, his clothes are completely soaked and water is running down his nose. A large puddle forms at his feet. He grins and says "It's a bit humid today, isn't it?"). OK, so we were saying that my legs ache. What does that mean? If you can, lift your left leg so that it's sticking out horizontally in front of you. Assuming that you can do it at all - give it your best shot - keep it up there until your leg muscles begin to ache. Imagine never putting your leg down. The pain from spasticity feels like that. The nerves conducting the pain to your brain will eventually get bored and take a break from transmitting the pain, the technical term for that is called habituation. But not all of them at the same time, and anyway, after a few hours the pain will cease to be the pain caused by tired and oxygen-starved muscles and begin to be the pain caused by muscles with microtears from over-exercise.
• Numbness: I have numb patches all over my body. Some of them affect only the skin, and some of them go down to the bone. Some seem to be permanent, and some come and go over time. I have them pretty much everywhere, but the worst areas include my face, hands, and feet.
• Chronic Fatigue: To say "I'm tired all the time" would be an understatement. I describe it like this. Suppose you get up before dawn, bike 20 miles in under an hour, then shower and arrive at work before anybody else does. You work a 12 hour day at the office, where you do some mentally challenging work that involves a lot of stress and being on your feet a lot. After work you head out to the gym where you lift weights for an hour. By 11pm you hit the nightclubs where you drink beer and dance with as many pretty girls as you can find. At 2am you set out for home but you can't find a taxi, so you walk 5 miles to your apartment building where you find that the elevator has broken down yet again. You live on the 10th floor, so you walk up the steps, all 240 of them. Think about how tired you feel when you finally hit the sack. Imagine that leaden feeling that comes when the day has well and truly been seized. I lived days similar to that when I was young, and I remember them well. With MS, that's how I feel when I first get up in the morning. For female readers, my wife says it sounds like being in the ninth month of pregnancy with a ten-pound child when the temperature has been above a hundred degrees for 50 straight days and has just hit 108 degrees in the shade. I know I talked about chronic fatigue already in A Long and Puzzling Illness, so I'm probably beating a dead horse. (His name is Boxer, and we'll meet him again later in A Taxonomy of Friends and Family.)
• Vertigo: I get dizzy a lot, but once again that is an understatement. I've had inner ear problems before, and that would induce vertigo when I moved my head. The vertigo that comes with my MS is subtly different. Moving my head can bring it on, but it is more a function of how my spine is twisted or compressed. Moving my head can start it, but it can also start when I am perfectly still, even when I am lying down reading a book. Doing something as simple as raising my arm can trigger it too.
• Problem Solving: This is a real hard one to nail down. I used to work in a field that involves heavy math, but over the last 4 or 5 years I have felt myself gradually losing my edge. I can't say why, but I don't seem to be able to concentrate. My MRI detected lesions in my corpus callosum, which is the strip of brain tissue that connects the hemispheres of the brain and seems to be involved in problem solving, so this may explain what has been going on all this time.
• Memory: I've always had memory problems - or at least people tell me that. I don't remember. Actually, I do remember that as an undergraduate in Australia I once had a tutor tell me that my "absent-minded professor" act was great, and that I should cultivate it if I ever intended to go into academia. I told her in all honesty that it wasn't an act, but she didn't believe me. Sometimes I would have trouble retrieving words, names, pictures, everything. Since the crisis point in December 2000, it has gotten a lot worse. Instead of word retrieval taking a few seconds, or tens of seconds, sometimes words just won't come. I find myself asking people to help me, like "What's that small animal with spines all over it... I used it in the last sentence" and have to be told "hedgehog" even though I'd been talking about hedgehogs for the last three minutes and actually said the word "hedgehog" less than 15 seconds ago. Sometimes my wife looks at me blankly because she hasn't really been listening (I think she learned the habit from me) and the conversation goes to hell in a handbasket really fast.
• Vision: I already mentioned that I get double vision sometimes. I have other vision problems too - ones that I would classify as minor, but worrisome. Sometimes one eye will go out of focus; it won't focus on anything either near or far. Luckily that's only happened a few times, and sleeping seems to fix it. Sometimes I get what I call "contrast problems" - it's like turning the contrast down and the brightness up on a TV, or like looking at everything through a frosted glass except that the focus stays fine. The colors seem wash out and everything seems brighter. So far this has happened several times, but only for a few seconds each time. I occasionally have trouble moving from the light into the dark - one eye will adjust quickly and the other will not. If I go back inside and quickly look into a mirror, one pupil will be dilated and the other won't be.
• Emotion: The emotional center of my brain seems to be a little off kilter. Sometimes things that are meant to be funny just don't touch me. Or maybe that's just American Humor. I'm just not culturally prepared for it. But some things send me into uncontrollable giggle fits that can be triggered by just thinking about them. Likewise I cry more than a man should, even a sensitive 21st Century kind of guy. I cried when I heard about the terrorist mass-murders in New York City and Washington DC on September 11, 2001. But then a lot of guys probably did. I'm not ashamed of it. It hit me profoundly because I was in DC the previous week, and was lucky enough to fly out of Reagan Airport the Friday before that Black Tuesday. I could have been on one of those planes.
• Tingling: This is a weird one: my hands and feet tingle a lot. It's not life threatening, but it sure can be distracting. It comes and goes.
• Lhermitte's Sign: This is another weird one that comes and goes. When I tuck my chin down on to my chest, I get a tingling like an electric shock run down my spine. This is a common one for MS patients.
• Sensory problems: If I were to say this is like I'm getting LSD flashbacks, I would probably be lying to you. I've never taken LSD nor any other hallucinatory drug (honest). The only things I am addicted to are real beer, cute women, and European chocolate (not necessarily in that order), and I like to have my head clear for all three experiences. But some of the sensory experiences I've had recently are like being on a wild roller-coaster ride through my own sensorium. Senses get mixed up. Sometimes touch feels like hot, hot feels like cold, and cold feels like pain. Sometimes I lose the internal positioning sense of my own body, for example, I can hold up my hands in front of my face and yet my body's internal sensors say that they are about 6 inches away from where I see them. My neurologist checks for this with the "Touch your nose, touch my finger" routine, but just like an old car, my neurons always seem to be working fine when I see the mechanic.
• Swallowing: I had trouble swallowing for about 3 weeks early in 2001. It felt like my glands were swollen (they weren't), and swallowing was difficult and painful. My Preferred Provider couldn't find anything, and neither could an ear/nose/throat specialist. They put it down to MS, but I'm not sure myself. I lost about 20 pounds during this period (which some people might think is a positive side effect, but I've always had trouble gaining weight, not losing it). One morning I woke up to find that I could swallow normally again.
• Gastric reflux: This is when stomach acid splashes out of the top of your stomach and burns the lining of your esophagus (the tube that you swallow down). I don't know if this is caused by my MS (the nerves that close the valve at the top of my stomach could be failing), but it is certainly masked by it. I get awakened at night by an upset stomach and a strange taste in my mouth. My doctor said that it is almost certainly gastric reflux, and it seems to be responding to the appropriate medication. However, I've never felt any pain from it. I should feel a burning sensation. Perhaps the nerves that transmit pain from that part of my body are, like so many of their brothers, burned out.
• Leg lock: The first time it happened I hopped down from the passenger seat of a friend's minivan to find... that my legs just wouldn't move. After a couple of minutes hanging onto a lightpole laughing (I mean it's totally weird, I'm sending the signals but those damn legs just wouldn't move) I managed a few halting steps, the next few were easier, and after a dozen paces I was fine. Scary as hell. You may think I'm hallucinating but it has happened to me twice and a woman at my MS support group mentioned it too.
• Gait: A physical therapist told me that I shuffle a little more than I should, I don't push off enough with my back foot and don't plant my heel firmly enough. I can do it when I concentrate and work on it, but I have to fight against those spastic leg muscles to do it. A stick really helps sometimes (see The Semiotics of Chronic Illness for more details on mobility aids).
• Stumbling: I fall down sometimes, particularly when I'm stepping over something, or the texture of the ground changes; going from concrete to gravel or grass for example. This may have something to do with spasticity or the fact that I'm no longer quite sure where my feet are, or the numbness in my soles. I stumble less if I watch carefully and think about where I am putting my feet. It's become second nature to do that now, but every now and then I forget.
• And Many More: Those compilation albums sold on TV including tracks from multiple artists like The Beatles or The Monkees always seem to include a track from the same band called And Many More. Or at least that's what I used to think as a child (doofus here). I always wondered why that band was so popular that they got included on every compilation album, no matter what the genre. There are Many More symptoms that I'm not describing here, some of which I am too tired to list and some of which I just don't want to talk about. Go to an MS website and figure it out for yourself.
• Memory: Did I mention memory problems yet?

All of these symptoms are exacerbated - made worse - by heat. If my body temperature goes up by as little as a degree (for example, from overactivity on a summer day or from a slight fever caused by an illness as trivial as a cold), this will change the conductivity of my neurons and cause my symptoms to worsen or cause additional symptoms to appear.

2002 Symptoms

All of the above plus the following disturbing new developments:

• Swallowing: In 2002 the difficulty with swallowing came back and now it has been constant for longer than I can remember, thankfully at a slightly reduced level. Go figure. I cope by eating slowly, making sure I chew everything properly, and choosing things that have sauces or gravy.
• Muscle twitches: You know what it feels like when a muscle just starts twitching on its own, like you've got a little mouse under the skin going jump-jump-jump? Maybe you've never experienced this. It's not real bad, just annoying. I've occasionally had it happen before. Now it happens almost all the time, and in many different places. I think my record is 6 different places at the same time. I think it is beginning to bug my wife when we are sleeping together.
• Symptom Masking: In February 2002 I had to have an emergency appendectomy. It started with a slight stomach ache one night, and I felt like I wanted to throw up but couldn't. Otherwise it seemed just like a tummy bug or food poisoning, both of which I have experienced many times before (most world travellers have). At 4am I poked around and found that it hurt more when I poked the right side than the left, so I figured a trip to the Emergency Room would be fun. They didn't seem to be too concerned, they just kept me in a room for 6 hours and ran a few inconclusive tests every hour or so. Sometime between 10 and 11am they gave me a quick CAT scan and put me back into the ER. Three minutes after my arrival a guy rushed into my room and asked me whether I had eaten or drank in the last 12 hours, how much liquid they'd given me during the CAT scan, and whether it was clear liquid or opaque liquid. A couple of minutes later another man came in and asked me the same questions. A couple of minutes later a third man came in and asked the same questions. By that time I was feeling a little testy. I asked him why they keep asking me the same questions, and by the way, who was he because I had seen the nurse shifts change and he didn't look like one of the nurses. He said "I'm your surgeon, the guy who was just in here was your anaesthetist, and we're going to take out your appendix." I asked "When?" He said "Now!" I literally had a 30-second phone call to my wife and was wheeled into the operating room and got sliced and diced. Supposedly it was a close thing, afterwards the surgeon said that if they'd left it in another hour, they wouldn't have had to bother to open me up. I guess MS was masking the pain.
• Symptom Distortion: Since the appendectomy in February my bladder felt like it was ready to explode with pain. I saw my doctor 3 or 4 times with this complaint, and each time he would give me a urine test which came up negative for infection. He'd shake his head and send me home. After the second visit his nurses would give me the "you again" look. Eventually he sent me to a urologist, who sent me to a neurological urologist. No joy so far. In November I got the idea that I should see the surgeon who removed my appendix. About 3 minutes into the visit he diagnosed a hernia. He was the first doctor who realized that a patient with MS presents symptoms differently. The pain in my bladder was actually coming from about 6 inches away, but the lesions in my spine short-circuited the pain so that it appeared to be coming from my bladder. Go figure. I got the hernia sliced a couple of days later and so far (please, please let it be true) the pain is greatly reduced. The hernia surgery wasn't a walk in the park, the swelling and bruising are truly memorable but frankly having a problem that can be completely cured with a 3-inch slice and a couple of dozen stitches is trivial in comparison to MS. After a week I could get out of bed, after 2 weeks I could go back to work, after 3 weeks it hurt hardly at all, and after 4 weeks it only hurt when I poked it. If you are male, and don't have MS, but have had hernia surgery, keep this in mind when you are asked to empathize with a person who has MS.
• Detrussor Sphincter Dyssynergy: Along the way, the neurological urologist diagnosed DSD. This is probably the cause of a recurring bladder and prostate infection this year (try being on Cipro for 2 months - that really sucks). If it's not one damn thing, it's another.
• Loss of Emotional Control: I go from fits of anger to fits of tears. This really sucks. It could be damage caused the by lesions in my hindbrain, which is apparently the seat of emotional control. But then again, depression is a listed side-effect of Avonex, and having to work and function as a responsible adult with the fatigue and the nagging pain in my bladder could be the source of the anger. Chronic pain has been known to make people cranky. It could also be psychological, the result of the stress of having to work a full load and keep up with a wife and three kids while coping with MS. My neurologist recommended therapy, I'm still searching for a therapist and I'm hoping I can find a high voltage one who can handle me. I've been told I have a "strong personality" many times. Whatever that means. Now that I know it is happening I can try to keep a lid on it, but it worries me. I try not to think about it. I've always lived by the reverse of James Dean's aphorism "Live fast, die young" (I remember that the Fonz added to it "Live fast, die young, leave a good-looking corpse"). Of course, Jimmy D. did live fast and die young, possibly the one follows from the other with high probability. I've always believed in "Live young, die fast" instead. Now I need to imitate Cheech and Chong, "Stay cool, man." I've heard marijuana helps MS patients with spasticity and emotional problems, but I can't say anything from personal experience. I knew too many potheads in the 1970s who burned out their brains on pot - they turned from high-IQ high-achievers to know-nothing bums. I can't afford that luxury.

2003 Symptoms

Spring 2003: My MRI is stable - meaning no new lesions visible since last year's MRI. Officially I'm "in remission", according to my neurologist. I'm out of the scooter, I've thrown away the damn cane, and I'm back to "faking it" again. The spasticity level is way down, I've started taking yoga classes which on one level seems to help, but I'm not seeing any additional flexibility really yet.

I saw Steve Tyler on TV talking about the early days of Aerosmith. He said something that stuck in my head: "Fake it 'til you make it". For MS sufferers that should be "Fake it 'til you break it". I'm trying to fake it at work. I'm good for 4 hours work, the next 2 hours are so-so, the 2 hours after that are like the night of the living dead. But according to Dilbert, we only owe them 6 hours of "real" work in an 8-hour day, right?

The symptoms listed above are all there, but at a slightly lower level - a level at which I'm beginning to think that I can cope with life again. I guess if I have to name the "biggest problem", it would be the DSD, which seems to be the cause of a recurring prostate infection. Guys, if you've never a prostate infection, don't go there. Girls, it's one more reason you can be thankful to be female: you don't have a prostate gland.

Fall 2003: The spasticity really sucks now. It's getting harder to walk. I'm still taking yoga classes once a week, they help me to stretch out, but nothing seems to relieve those spastic muscles. Still, I've got a long way to go. I've seen a lot worse spasticity at my MS support group, so I shouldn't complain.

I'm starting to slur my speech too. That's worrisome. I need to communicate to earn a living. My wife has me signed up for speech therapy in the New Year.

2004 Symptoms

Speech therapy didn't help. The therapist concluded that weakness in my chest muscles makes speech very tiring for me. Exhaustion makes me slur. There's nothing they can do about it. The damn prostate infection keeps flaring up every 3-6 months. Yoga seems to be helping with the spasticity. I seem to be flaring for 3-5 days every 4-6 weeks. Looking at it positively (for the sheer mental exercise), I'm doing better at managing and recognizing my symptoms.

I am getting a little sick of going to a doctor with a minor ailment, getting bounced to a specialist, spending weeks of time and bulk money on copays, only to have the specialist say "I can't find anything. It must be your MS."

2005-2006 Symptoms

"De Nile" is not just a river in Egypt. Not gonna think about it. One foot in front of the other, rinse and repeat.

2007 Symptoms

May 2007

Looking back over the last 2 years, I refused to write anything here because I was in denial. Yes, I filled my life with busy-ness, friends, family, an online forum, getting my career back on its feet. But the bottom line was that I didn't want to think about it.

So where am I this year? Some time over the last 2 years my prostate infection cleared up. At some point bombing it with a month or more of antibiotics every few months must have worked. I'm glad. It was not fun. This year I had a pretty clearly defined flare from February to May. My fatigue level was up (go figure), but two things tipped me off. The first was an increase in double vision, typically in late afternoon and evening when I got more tired (than normal). The double vision came and would not go until the next morning, in contrast to the sporadic double vision reported above. The second issue was a sensory thing I'm kinda embarrassed to report.

It starts out with my right side feeling good. Pre-orgasmically good. I know, I know, everybody should have this problem. It lasts 10 or 15 seconds during which I don't dare to move or even breathe in case it stops. Then it feels like my right side is either plunged into ice water, or into a very hot sauna, sometimes it's one way and sometimes it's the other. That will last for about 30 seconds. Then that stops and I get several minutes of strong tingling, like I'm being walked all over by soldier ants. Afterwards I feel more tired than ever.

When I say "on my right side" I mean everything on my right side. Arm, leg, torso, face, the whole enchilada. If I didn't know I had MS, I'd think I was crazy. Muscle memory being what it is, I remember now that this was always a precursor to those tonic spasms that got me diagnosed in the first place. There were two differences this time though. This time it didn't progress to the tonic spasms (which is good), but it happened several times a day for a couple of months, rather than once or twice a year (which is bad).

Oh, and my reflexes on my right side seem to be back, after an absence of at least 6 years. Once again, go figure.

October 2007

I'm getting double vision more often. It happens reliably when I look to the side or tilt my head. It happens even when I'm looking straight ahead if I'm tired, which is happening more often now. My hands have what my neurologist would call "sensory issues". They tingle, burn, and hurt at the same time. It hurts to touch things. It was particularly bad during the last flare, now it is down to a dull ache. It's just the inside of the hands, which is weird. I'm starting to get things persisting after a flare, so perhaps I'm going relapsing-progressive.