Saturday, January 31, 2004

Of Mice and Me

Once again John is way ahead of me. He sent me an article about a creatine-plus-minocycline study in ALS mice.

Now, the first thing both John and I wondered is how you can develop or maintain a breed of ALS mice when, in humans, the disease is vastly non-hereditary and the cause is unknown. If you know how to make ALS mice, don't you know what causes ALS? I think a hint lies in this paragraph from the article:

In the new study, Dr. Friedlander and colleagues studied mice with a mutation in the human SOD1 gene, which is found in about 20 percent of patients with familial ALS. Mice with this mutation develop nerve damage and neurological symptoms that mimic those of ALS in humans.

To me, that means they have schooled up a bunch of mice who have the rare, hereditary ALS, and are hoping that the treatment for the symptoms of these mice will be effective in animals with non-hereditary ALS. Water puts out a grass fire whether the fire was started with a match or a lighting bolt.

So creatine-plus-minocycline is better than riluzole in mice. The clinical trail for riluzole found this effect:

In the largest ALS clinical trial ever, Rilutek was shown to extend the survival of ALS patients by three months. A total of 959 patients participated in a multicenter, double-blind, placebo-controlled phase III trial, in which survival served as the primary endpoint.

Survival as the endpoint sounds like doublespeak meaning the endpoint is when the patient died.

The researchers assessed each mouse's motor strength and coordination on a weekly basis, starting at 10 weeks, by observing its ability to remain standing on a rod rotating at 5 and 15 revolutions per minute (rpm) for up to 7 minutes. Disease onset was defined as the first day a mouse could not remain on the rod for 7 minutes at 15 rpm.

Imagine how baffled those mice feel. Here I am, twirling on a rod and they're waiting for me to fall off and die. This is not what I planned. I don't understand what is wrong with me. When will I fall off? Let's see how long I can stretch this out... Maybe I will be the mouse who sets the world record for twirling. Super Mouse. Super Mouse. That's gotta be my mantra.

Future Performance

I have been blogging a lot today, and I suppose that is good. I have been very busy and barely able to keep up with the emails from so many awesome people in my life. I am falling behind, actually.

A lot of people are praising me for my positive outlook. It is true that I am basically a positive person, when given a chance, and I feel very blessed right now. But past performance is no indication of future performance, and there may come a time when I am bitter, resentful, mean, sullen, petulant and depressed. It really could happen. This sunny period at the beginning could be the Illusory Frolic. Right before the Morlocs get me.

If that happens, the blog may get more interesting. The best writing comes from suffering.
Hawking's story

I did get to the Costco pharmacy and ordered the $831 Rilutek, and the tech who helped me believes that it will cost me only $15 and I will not be billed anything else. Jaw drop. That would be good, but let's just see.

Here is Stephen Hawking's story, located and sent to me by John.

Hawking talks about a time when he had to communicate by raising his eyebrows when someone pointed to a letter. This is actually a big fear for me: Not being able to communicate fast enough and having people make decisions about me without taking time to consult me. I am a control freak. I intend to work out a simple but effective system of eye movements, a code or language if you like, that will enable me to communicate with reasonably intelligent people (my family for example). I will post the chart showing the code on the wall. But if something happens to me unexpectedly that makes it hard to communicate, please, please, I beg Storm (my friend who works at NASA), to please work out a simple code on my behalf.

I really doubt that this will happen, but it is a big fear for me, hence the entry above.

No exercise for the past three days, and I still have not yet time to get started on the research trail, because I have been chasing pills and giving blood all over town, and being psychedelicized by my own fluorescent pee.

And though being a parent is wonderful, there is a Mommy Tax and a Daddy Tax on your time. For childless people to understand it, try this: Flush away half the free time you have by programming your watch to go off an random times for unknown durations, during which period you will cover your ears with headphones from a special radio that plays three radio stations at the same time AT MASSIVE TOP VOLUME (this is to ensure that you cannot think). Then tape oven mitts to your hands and run around in the street dodging traffic. After your watch signals the end of the random period, just relax and resume your work. Then reduce your free time by half again. And half a again. Then work smarter, not harder.

(While writing the post I was called on to wipe my son after his potty. I was going to say that it's not all as wild and painful as described above. But, ow! My elbow sure does hurt after it hit that door knob.)

Both the doctor and John referred me to:

Amyotrophic Lateral Sclerosis: a Guide for
Patients and Families, Second Edition, edited by Hiroshi
Mitsumoto, MD, and Theodore L. Munsat, MD, 2001, Demos
Medical Publishing, ISBN 1-888799-28-5

I am going to buy this book.

John also provides invaluable information like this:

"A search of medical journals found 4,700 articles on ALS for the years 1920-1998. Half of the 4,700 were published in the fifteen years from 1983-1998. In the period from 1993-1998, there were never less than 200 articles on ALS published per year."

I think the researchers find it so interesting because it is even across the world population and appears to have no causes. There is a Nobel waiting for anyone who will crack it.

Pill Man

From the Department of Things You Don't Ordinarily Notice: ...Have you ever entered a restroom where someone didn't flush, and seen a brilliant, Day-Glo sort of yellow/green accumulation? If memory serves, I have seen this from time to time and thought nothing of it. Well, today I took about 12 of the 13 different kinds of Ineffective Supplements, (I like to call them that rather than Unproven Supplements). Some of these are quite expensive. I have encountered vitamin evangelists over the years, mostly friends, and when I used the "expensive pee" quip on one of them he got quite haughty and told me studies showed that the vitamins he was taking were retained and used, not peed out. The pills come in various colors. Anyway, when I saw it today, I immediately recognized the Day-Glo Pee and understood what sort of lifestyle the anonymous inconsiderate who used the restroom prior to myself was leading. He had been a Vitamin Person. Then I wondered what the purpose was of turning the customer's pee a vivid color suited for a fire truck or emergency road flare. The only thing I can think of is that certain people in the Ineffective Supplements industry have studied the psychological effect on the customer of dramatically altered pee chromatics. They must have found that people like it. They like being reminded that they are taking wildly expensive bunko. It also serves the purpose of a visible reminder to the person when they forget, or choose, to go off the Ineffective Supplement. "Oh, Gosh! Why is my pee a nearly-clear light yellow? What is wrong with me?!? Oh yes, I am no longer taking Co Q10. I'd better go down and buy some today!" It's the best sort of marketing. Highly personal. Direct. On-time. Buy More.
I had this belief that since I was on short-term disability, I would quickly organize my stuff and get so many things done around the house that it would look like a miracle. Well, that hasn't happened yet, because I feel like I am always running after details. Blood-sucking details half the time. After the diagnosis confirmation, you my friends sent me a flood of really great emails, and many of you have not even received replies yet. I am really sorry about that and have a policy of replying to every email unless it seems like a "capper" email where the other person is happy with my reply and has nothing more to say for the time being. What happens when it takes me a long time to reply is that sometimes the person who sent the very nice email sends me another one a few days later, apologizing for being so insensitive in the first one (the very nice one).

Details. Um, they were able to clarify what blood tests they wanted, and yesterday the nice guy at the lab took five vials. While sitting in the lab, I had to first call the clinic, and the person who answered said I should talk to their lab person and sent me to someone's voice mail box. I hung up on that and called back. This time there was a different person on the line and I had a bit of a run-in with her. I know these people are busy and probably overworked, so I quickly said what I needed: clarification of tests requested, and a diagnosis code. Then to give her a sense of where I was on the diagnosis-testing-treatment timeline, I started to say "I was diagnosed on the 28th and my name is---" but she interrupted me and asked me what my name was. I am the king of irritability, and I did not like being interrupted, so I began: "I was diagnosed on the 28th and--" and was interrupted again. We repeated this a few more times until I asked to speak to her supervisor. Lo and behold the director of the clinic (the medical doctor and researcher, the big shot) comes on the line and apologizes for his staff and quickly gives me the diagnosis code and clarification of tests requested.

The way I look at it is that she was talking to some guy who she can assume is suffering from some freaky disease, and who for some reason wants to say something about how recently he was diagnosed before giving his name. Once you realize that the person, the patient, the Victim, the freak, me, your customer, is insistent on that (and since he is being very polite and never raises his voice), why not just let him say it? Am I the jerk here? I don't treat my customers this way. How about you, readers, do you like being bullied on the phone? Or do you give in, because it is quicker? Or do you, like me, dig in your heels like I do, to try to make a change?

Friday, January 30, 2004

The doctor prescribed this drug riluzole, which is under patent and the brand name Rilutek. He also asked me to get some blood tests done. I didn't accomplish either of these things yesterday. So today I set out bright and early. I went to the lab near my house (my first time there) and they were baffled by the tests he asked for. They called the clinic. The guy at the clinic asked to talk to me. I wound up talking to this guy like some kind of interpreter between him ands the lab tech. Why? The lab tech had the same feeling, but he told me that the guy at the clinic asked to talk to me. So then the lab tech got the phone back and was told by the clinic they would call him back. I read an entire essay by David Sedaris in the New Yorker, and made some phone calls on my cell phone. Until it died. But before it died I found out that the local pharmacy will sell me 60 of these Rilutek for $951. And this is a drug that at best may mildly slow the progression of ALS. And can give you nausea and the runs, etc. But $951 for a bottle of 60. So, on a tip from the nurse at the clinic, I called the Costco pharmacy. Costco is a membership ultra-mart, but the tip is that their pharmacy has cheap drugs, and you don't have to be a member to use the pharmacy. Probably because of some federal law that the Republicans are trying right now to get rid of. Costco has the same patented, marginally-useful medicine for $831. Hopefully my insurance will cover it. I do have the primo insurance. Let me give a big shout-out now to my buddy Dan, who used to work in the accounting center of a major company, and described to me how all the executives wanted to entice the employees into the HMO plan, but they themselves all chose PPO. Dan said, "Whatever the executives pick, you should pick too." I looks like he was right. Whenever I hear some poor blighter getting a hassle, he's with an HMO. When I tell the staff at clinics that I have PPO, they smile and breathe a sigh of relief. "Way to go!" they sometimes say. Then before the cell phone died I called another local pharmacy. He put me on hold and then came back on the line.

"Wow, that's an expensive drug!"
"Yeah, I know."
"What have you been quoted?"
"That's what I'm calling you for."
"Well, I can be competitive."
"OK, what's your price?
"I'll have to order this because we don't have it in stock and I can offer a good price. What were you quoted?"
"I am not sure I appreciate the trajectory of this conversation. I am seeking a price from you."
"Well, I can't give you a price, but I can be competitive. I have to see what else you were offered."
"You need me to tell you what other prices I was quoted before you can quote me a price?"
"OK, then the price was twenty dollars."
"Well I can't match that. But I can give it to you for $1100."

OK, this is the Wild West, and I am a tough cookie, so the incident was merely ironic. But imagine if I were an elderly person, or someone depressed and axious. And this guy is trying to nick for every dime.

Not long after that call, the cell battery died, and I had to go home because I was hungry. I called the regular lab which I was familiar with and they were less confused about the script, but did have a couple of questions. I emailed the doctor at the clinic with those questions and left a voicemail for one of the nurses. Then I called the front desk. They said the doctor would be back in on Wednesday, but that he would probably check his email today. "Okay?" Maybe I was cranky, and I said: "Well, it's not really OK. But I appreciate your telling me that. Thanks."

Looks like I will be going to Costco to get this stupid pill. And maybe get my blood drawn today or tomorrow for the tests.

Thursday, January 29, 2004

Change Is Good
My neurologist was saying that the real question that needs to be answered is why the voluntary motor nerve cells in the brain die, while the sensory nerves just millimeters, or microns away next door, do not die. I said that if I answer that, I get the Nobel Prize.

He also agreed with my new motto: "Change Is Good." Since we don't know what causes ALS, when you start making changes in your life, behavior, and environment, you stand a chance of eliminating the factor, or factors, that may be killing you. Why did I stop eating eggs? Why will I trade in the Neon for a Passat? Why get the iPod? Why take the 13 substances? Because, silly, "Change is Good."

Unless the apoptosis (programmed cell death) and subsequent demylination (picture an icicle melting) are genetically programmed into me. In which case no amount of Change is Good will make a difference. But if it were merely a genetic disorder (Hah! Notice that glib post-HGP phrase) they would have found the cause and quite likely be on the way to a cure. Yes, there are some people who have a genetic form of ALS (I believe I read that somewhere), but for the vast majority of people that is not the explanation. ALS appears randomly throughout the world population at the same rate everywhere. And you can bet they have done lots of studies on diet, exposure to toxics and radiation, etc., trying to find the answer. That's reductionism and correlation. Very powerful tools. Which have yielded naught, against ALS.

Maybe it has to do with particle physics. Don't laugh. Seriously. Did you know that billions of neutrinos pass through your thumbnail every single second? The true universe is not made up of the things that make up the universe you and I believe that we live in. Normal solid matter is 4 percent of the universe, according to advanced scientific studies performed by orbiting telescopes and instruments. So maybe there is a rare event in which a tiny black hole (or what the heck, just call it a Magic Particle) comes out of nowhere and hits your brain just right.... No, that doesn't make sense either, because (a) the Magic Particle has a trajectory and should injure you along that path, not in this nice vertical way that all ALS partents have, neatly confined to the motor cortex. Then how about some generalized non-trajectoried bathing radiation? OK, but why don't your sensory nerves react the same way when they get bathed? We are back to the same question: What is it about voluntary nerves that makes them die this way (in the presence of the Magic Particle or bathing radiation or even naked pictures of Julia Child)?

I think it must be: Evil thoughts on the part of the afflicted. Has anyone ever done a personality study on the ALS population?

How about ... evil deeds?!?!

I obviously have a lot of research to do. I am a monkey in the cockpit of an airplane.
Pill Man
The clinic provided a list of things that are not proven to do people with ALS any good, but which you can take if you like. I will take all thirteen (13) gulp, of them, probably. Today all I got was some vitamin E, vitamin C, and some DHEA. I have never taken DHEA but you can get it at the local GNC. I read a glowing article about it in a magazine about 7 year ago. It is a hormone, and a hormone precursor. It causes a hormone cascade that ultimately results in the manly stuff. Aggression. Rage. Hitting. You know. And muscle mass. Which is why I'm taking it. Should help with the workouts. I also found out i was totally wrong about what creatine is. I htink I got it mixed up with DHEA. But creatine is just part of the cell energy cycle, it is something used by the mitochondria (our friends). I also found out I have been taking the creatine in the wrong way. You are supposed to take it in powder form with juice and on an empty stomach. But I have been taking caplets with food. They also say to take 5 grams instead of the 2.1 I have been taking. Anyway, soon I will be Pill Man.

The clinical trials nurse at the clinic was saying they have two trials, one with a pill and one with twice-daily injections. I mentally crossed the injection one off my list until he said that you have to stop taking creatine in order to partcipate in the pill study. I forget what that one is. And you have a 50 percent chance of winding up with the placebo. So why not just take the studied substance on your own? Altruism aside. So that leaves the Minocycline injection study which, quite frankly, I would be unlikely to do on my own. The trials nurse said the injection is "painless." My mind ignored that because I have trained it to ignore pure horse pucky, but when he kept saying "painless" I asked him to clarify and he said that the needles were the kind used by diabetics, and so tiny you cannot feel the injection. I called my diabetic buddy and he said that was close to true, there are such needles, and he uses them. But he says you basically have to hit yourself with the needles when you are first starting out, because the brain has an inate prejudice against you poking yourself with sharp objects, and will make your arm stop. Do it hard enough and fast enough, he says, and you should be fine.

Mountain man
As with my former descriptions of my athletic prowess, you have to take this one with a grain of salt....

I used to go running with my buddies at work. And one of them, a very tall, hairy fellow, is also very nice and likable. Anyway, he is an extreme long-distance runner. I am a short-distance runner. More of a casual jogger, really, but I am pretty much built for running, so as with a lot of long-distance runners, I found my tall, hairy friend had a very slow pace. I had to struggle sometimes to slow down enough to match his pace. He was training for this astounding 100-mile run. I know you don't believe it, but people actually do this. All in one 24-hour period. No lie. Anyway, he was training for this 100-mile run. So I forgave him for being slow. His pace was the right thing for the event. So he completed the run and we all congratulated him. Then the next year he wanted to do it again. And the same thing happened, where he was usually pretty slow during our jogs, or slow to moderate. Then he completed that run, in June or July of 2003. I noticed that his running was getting stronger. When I ran with him, he was running at a good pace. I was impressed. After a while, I realized I could not keep up with him, even on the moderate runs we used to love so much. True, there were other things going on, like, we had a small baby at home, I had gotten sick from time to time, etc.

But I just remember this one day when we ran up our favorite hill (such a beautiful hill!), and I was bogging down below him, and he just kept going up and up. Stronger and faster. Tall. His back straight. From down below, it looked to me like he was riding up on an escalator. And I thought, "Wow, that 100-mile run really changed him; he has moved up to a whole new level." And that was probably true. But now, in my mind, it also marks the point where, because of my neuromuscular condition, I had moved down to a whole new level. And I just didn't know it yet.

The day before yesterday a friend wrote a joking email that he hoped the appointment (yesterday) would result in a prognosis of nothing more than enlargement. I wrote back something off-color that I can't repeat here. Oddly enough, I did get an enlargement, of sorts. I told them I was 5'10-and-a-half", and they did not believe me. So when they measured me, I was 5'11". My wife swears I have always been 5'11" but anytime I measured myself (like, once a decade), it was 5'10-and-a-half." So, there ya go. Enlargement!


Wednesday, January 28, 2004

Big Whoop

The last time I had an EMG (where they stick the needles in you and listen for electrical signals), it went OK. This time it was kind of like, pretty painful. They stick them in, which is one thing, and then they do this thing called the "insertion test." That means that they are sticking it in a little deeper, moving the needle around, trying to annoy the muscle and look at the signal. I don't know what the factors were, maybe that I was lying down, or cold in that hospital gown, or that I'd had a workout yesterday, or what, but it was excruciating at times and I was sweating and shaking. They also have this thing, while the needle is still in you, of making you use the muscle they poked. Think of tearing and you'll see my objection. My thumb web muscle is kind of ticked off right now.

After the needles, and all my leg shaking, I was actually limping, and walking very stiffly in the hall. I got off pretty easy though: Apparently they have a test where they put the needles in you and add electric shocks! Let me make one thing clear: I am a wuss. I'm not good with pain, and needles, and like, rectal chainsaws. So what might be excruciating to me might be a walk in the park for someone who would much rather have some wee bitty needles in their flesh than have another chemo treatment.

There are people who go through a LOT of pain and discomfort because of their illness, and ALS just isn't like that, from what I think I know. Basically you slowly wilt and then die. No painful surgery, no being on chemo and trying to decide if you would rather be dead. It's kind of a gentlemanly disease. It gently steals you away.

And yeah, the doctors at the specialty center did confirm that I have it. Big Whoop. We videotaped them giving me the bad news. I have myself on tape right after that saying: "Big Whoop!" Not to them. To the camera, to myself. Big Whoop.

Why? Well, because, despite that I may have it, I intend to die of something else, at an advanced age. Or, given the amazing strides in science that we see every day, never die at all.

The cause of ALS is unknown, and there is no definitive test for diagnosis. But my motor functional tests, and EMG, and MRI, and the negative results for other conditions (such as MS), seem to point to ALS.

There is one approved drug to slow the advance, and they wrote me a prescription today. And there are some clinical trials for other drugs. I'll probably get in one of the trials. Creatine is a good thing to take, and I am already on it. Vitamin E is recommended too. I'll pick that up when I file the prescription.

They have workshops where all the ALS patients get visited by all sorts of specialists, occupational, physical, etc., and various doctors. They have monitoring programs. Basically these people are a full-service ALS center. I am in the right place. I appear to have the right insurance.

There was only one thing they did which seemed odd to me. The unter-doctor told me to always hold on to my MRIs, then later told me he wanted to keep mine for an extra day, so they could be photographed, because the FLAIR signal was abnormally bright. I asked him if this was unusual and he said yes, that in many ALS patients the condition does not even show up in an MRI. Later though, when I asked the main doctor whether the brightness of the FLAIR signal was unusual in my MRIs, he said it wasn't. Maybe he thought I was trying to suggest that the MRI proves I do not have ALS, but I certainly did not say that, and I don't think I conveyed that impression. So I am puzzled why my MRI was so unusual they decided to keep it, and at the same time it was unremarkable.

I asked the head doctor to give me a rosy scenario and a pessimistic scenario. In the pessimistic scenario I could be dead in nine months. He says that's not very likely. In the rosy scenario he says my symptoms could go away and I would be cured. He said that was extremely rare. The second rosy scenario is that my symptoms take a very long time to get worse and I end up living (and here is the magic phrase) "a normal life span." He said he has one patient who was diagnosed at 72 and is now 96. A real feisty old bat, apparently. If I can have "a normal life span," that would mean I get to see my kids graduate from college, and then some. (Grandkids?) And honestly, I have to tell you that if I can make it that far (and I think I can) that somewhere along the way (rather sooner than later), a cure for ALS will de developed. As well as a cure for all cancers, AIDS, and perhaps even aging itself.

He said he has reason to be optimistic about me. At 40 I am young, for someone who has ALS, which apparently gives me a reserve of cells to kill off with relative impunity. (ALS involves what appears to be apoptosis, or programmed cell death). I am chipper, and apparently that matters a lot. I am, uh ... good memory was not one of the factors. I am relatively strong and relatively unimpaired now. Um. Uh. Good thing we got this on videotape. I have good lung capacity. Yes, he says that matters a lot. Or, that is to say, it is a very important marker. Of your decline. There is an expected lung capacity for someone with my profile, and they tested me three times, and each time, I hit 94% of the expected capacity. They say this is good.

(The extra six percent is taken up by the Libyan enriched-Plutonium slugs I am storing, for a fee, in my lungs.)

Well, yeah. So, there you go. Even brain damage can be overcome.

The person I worry about most is not myself, because I at least get to stand in the center and fight back against this thing. And maybe not even so much my kids, unless I start to go downhill very fast, which I doubt will happen. I worry most about the impact on my dear wife, who came with me today, and stayed with me, and was my friend, and who has this condition too but is unable to "take a break" when she feels she needs it. But, she has said it is easier these days, having me around the house. And we got a chance to talk in the car on the way home, and we are going to look for ways to make life flow more smoothly for both of us.

Help me with my brain

For those of you who loved Black Sabbath and were amused by Ozzy Osbourne long before his recent fame, the phrase "Help me with my brain," brings a chuckle and a smile. For the rest of you? It's too late. Anyway, here is a nice shot of actual brain damage. This image appears to be flipped left for right, but the reason for that is that the MRI is taken from the perspective of the toes looking up at the top of the head. So in the image you see, the problem is the brighter, horizontal area about halfway up the skull on the left side (but that's really the right side of the brain.) It looks like it is on the fourth brain squiggle up, depending on how you count brain squiggles. There is a little bit of the same brightness in the corresponding area on the left side of the brain (the right side in this picture). There are numerous "slices" of the brain that they image in the MRI, and this bright smudge is seen in a number of them, ascending through the motor cortex in what I have been told is the typical ALS pattern. Today my lovely wife goes with me to the speciality center, where they will hopefully hit me with their best junk. I will let you know how it goes.

My right side is much better than my left side, but last night I asked my lovely wife to wiggle her fingers as quickly as she could, and it seemed faster than I can do it even with my right hand.

Monday, January 26, 2004

God damn you, A. A. Milne!

As I said, the whole ALS diagnosis seems a thing of the past now (I have convinced myself of this based on the EMG test), although I know that the appointment on Wednesday could make it a Thing All Too Real quite suddenly. So there I was tonight reading the last chapter in The House at Pooh Corner to my son, at his bedtime. And this is the chapter where Christopher Robin is going away (presumably to boarding school or school of some kind, or just maybe growing older), but there are strong overtones of death. Death of Innocence, whatever. All you English major types pack up your things and clear out (I won't have your kind here!). Basically, it is a sad and ambiguous chapter. I remember as a child being somewhat disturbed when it was read to me, because it seemed to me that Christopher Robin was dying. Anyway. Anyway, anyway, I figured, as I was reading to my son, that this will be no problem because I can surf right over the emotions and keep myself together. Wrong. I wind up unable to read and he's asking me why, and I tell him the chapter is sad, and I will read it to him tomorrow. He says that's OK, you don't have to be sad ... read it to me now. I try it a couple of times and can't do it. I wind up crying in front of my son. He's hugging me to make me feel better. Laughing a little and trying to cheer me up. He hugged me and reminded me that he hugged me last time. He means when I dropped the baby about nine months ago. Tonight I wasn't sobbing, not a total breakdown like that day after lifting weights, but just basically unable to read the book. I could barely sing him his night-night song. Again, those of you with lectures about how it is healthy to cry in front of your kids, pack your bags and get out (along with the English majors!). Yes, I know it's healthy, and yes I think he handled it OK (because he had some reasonable explanation: The chapter is sad). Still, it must have freaked him out on some level. A book is a book is a book. Why would Daddy fall apart unless ... unless ... unless there is something else going on ... something like (insert worst childhood fear here).

We had a good run today. Maybe I am just physically tired? I had plenty to eat. Not sure what that was. Reverberations?

Basically, I believe that the last thing I want to do is dump worry on my kids when they are 4 and 1. I would rate tonight's performance as a C-. Coming home sobbing from the gym, and having my son see me, would have been an F.

God damn you, A. A. Milne!

A friend of mine suggested I do some juggling. This is perfect! I was looking for some kind of exercise that would retrain my nervous system and muscles to react quickly. Juggling! The perfect test and the perfect exercise!

As a kid I was able to juggle three objects, and thoughout my adult life I have occasionally (maybe once or twice a year) briefly juggled three objects. I am no expert juggler but a typical expectation would be that I could do 20 successful contacts (by that I mean a catch and throw) with each hand with very little problem. And even if I messed up once or twice, I should be able to get a nice long cycle going soon enough. Sometimes up to 100.

I just tested myself with some ideal plastic balls about two inches in diameter and weighing about as much as two floppy disks each. I tried about twenty times (while videotaping myself), and always dropped the ball after one successful left hand contact, sometimes two. I start off throwing up the ball with my right hand, and then my left hand catches it and throws it back up, and then I would usually fumble. Either because the left hand could not catch the next ball, or because it threw the first ball in the wrong way.

Looks like I am Juggling Impaired. But my pal has provided me with a very appropriate thing to work on.

We moved to this house a little over three years ago, and I remember juggling the oranges in the back yard with success.

And then my pal sent me an email with another genius stroke ... ping pong!

I recall playing ping pong at work sometimes within the last couple of years and being kind of bummed because I seemed to suck even worse than I thought I would. Maybe I am just no good at ping pong or maybe that was an early sign. We'll never know. Unless I win the World Bikini Ping Pong Championship. And what are the chances of that?
Sip sip sip
They took a wee bit more blood today in order to re-do the Lyme disease test. They will also look at the cholesterol, although it has only been a month since I stopped eating eggs.

Sunday, January 25, 2004

I have to admit that based on the EMG results, my gut instinct now assumes it is a certainty that the ALS specialists on 1/28 will test me and tell me I do not have ALS. I found myself realizing that I had made this assumption. It feels like such a relief. Honestly, I now feel like the guy who Was Told He Has ALS. It feels completely behind me. It feels like, "That was an interesting episode!"

But my rational mind knows that their equipment and analysis may be better than those of my neurologist, and they may still decide that I have ALS. That will come as an unpleasant shock, but I would be able to cope. My rational mind also knows that even if I do not have ALS, I have this weakness and slowness and a lesion on my brain that shows in the MRI. And my speech seems to be getting more clumsy. So even if I don't have ALS, I should still be very concerned.

However, my gut has enjoyed the vacation.

Saturday, January 24, 2004

My wife was today snookered into becoming the President of a local philanthropic organization. "In name only," he said, "We're going to share the duties." Because of my medical status and the stress she was under, she wasn't even going to go to this meeting. But she decided at the last minute, and those heartless sharks nailed her at last. One of our friends on the board even knows about my ALS diagnosis. I am not saying anything negative to my wife, but to you dear reader (hi, Honey!) I admit I forsee a day not very far off when Something Important Has To Be Done Right Now and my dear wife rues the day she let them bamboozle her.

Friday, January 23, 2004

Ambiguity is Good!

Most people think Stephen Hawking has ALS but my neurologist says that Stephen Hawking has PLS, primary lateral sclerosis, a very slowly-progressing condition like ALS that typically strikes teenagers. ALS is usually diagnosed after 40 and Hawking was diagnosed at, I think, age 21, after ignoring it for a year.

My neurologist did an EMG on me this afternoon. I think it stands for electromyogram. But I have no idea. It means sticking needles into your muscles and looking for the electrical impulses. The doc tells me that normal people will show no signal at all from muscles at rest. There is no definitive test for ALS that I know of (since they don't know what causes it), but the doc says that the EMG is the main, most indicative test for ALS. In ALS, the muscles will show spikes, basically, of electrical activity even when at rest.

He stuck needles in my left deltoid (front shoulder), biceps, inner thumb muscle, and outer pinkie muscle, as well as my left inner knee and right inner knee. I do have noticeable twitching in the muscles of my left hand from time to time (it even happened several times while he was testing me), and once in a while in my left leg.

I took lots of pictures but I can only upload one per day to, so I bid you enjoy this one. Only one small blip on the monitor, that I see.

My left deltoid shows some infrequent blips but not as much as expected with ALS. He said it seemed almost normal. The biceps and knee were next and those seemed normal to him, with even fewer blips than the few blips of the deltoid. Maybe even none. Then he poked my left inner thumb muscle and my left pinkie muscles (in the hand down below where the joints start). These were also almost normal with the occasional stray blip.

He tested the electrical activity when I was using the muscles to push, and I was supposed to be able to fill up the output screen with impulses, and mostly I did, except for a weakened signal for moving in a couple of instances, which (I think) were the left pinkie spread and left leg lift.

I asked him if the EMG results were ambiguous and he said they were. He started talking about the possibility of some rare form of atypical ALS or other neurological condition.

This is encouraging to say the least.

And in ALS the muscles underneath the skin should be constantly shimmying, due to all the random electrical activity. This should be visible to a careful observer. He doesn't see that in me.

He talked about upper nerve disorders (in the brain) versus lower nerve disorders (in the spine). He said that ALS involves both. My EMG results led him to say that while I show upper nervous system problems (the brain lesions seen in the MRI, and the left-side impairment), the evidence of lower nervous system problems (as would be shown by the EMG for someone with ALS) is lacking.

He mentioned that my lab results show a CSF myelin protein level of 3.0, while normal is less than 3.0 This indicates possible myelin shedding. Myelin is the insulation around nerve cells, and when you lose it, as in MS, the nerve cells stop sending signals properly and, I believe, eventually die.

He also noted that one of the three indicators for Lyme disease on my lab results was in the "indeterminate" range while the others were insignificant (good). I was negative for the signal of prior Lyme infection, but it is possible I am just getting one. He is going to have them redo the Lyme blood test. I'll go have blood drawn Monday. Lyme is treatable with intravenous antibiotics. But it is treatable.

While my left hand is still very weak, the doc felt that in many of the strength tests he did on me today, my strength is normal. He does not note any deterioration since he first examined me and the day he diagnosed me on 1/13. I asked him if there should be some progression and he said it varies. I told him my sense is that the large muscles in the arms and legs are doing much better than the small muscles in the hand and foot.

So I am getting my hopes up that the people at the ALS center will test me and reject the ALS diagnosis. If that happens, then I am left with a scary Mystery Condition involving motor impairment, atrophy, and brain lesions. But that would be better than having ALS.

I stopped cracking my knuckles in 1997. It is a horrible habit. Call me crazy but I wonder if I should start again. Maybe it provided some kind of feedback or hormone or protein release or something. Today after the appointment, I cracked the knuckles on my left hand, with no joy but also no guilt.

Oh, and I weighed myself on the real scale at the doctor's office, wearing a t-shirt, socks, underwear, a watch and a paper medical gown. 137. Who know how much I weighed on Christmas Eve. My guess is 133.
Fickle bathroom scale now says 130. Last time it had a two-pound deficit handicap, and now it doesn't. I theorize that my lovely wife read my blog post, and adjusted the scale to true zero to go in my favor. But ironically it gives me a lower reading now. I'll ask her. Ancient old bathroom scales are hardly scientific.

Thursday, January 22, 2004

Little things
I have some backyard mud sitting in water I got from the tap a few days ago. Every day I inspect a drop of it under the microscope, hoping to see some protozoa swimming around. (A commenter identified my favorite, the shoe-shaped one, as Paramecium). So far though, all I see in the artificial 'pond' are single-celled plants (algae?) and some cool mutli-cell plants (picture a string of cells in a straight line). But no swimmers. I did some research on the web and found recipes for making paramecia. Basically you put some food (oats, or dog food or whatever), in water for 7 to 12 days and let the bacteria bloom (the water clouds up). Then when it starts to clear that's a sign that the paramecia are chowing down and replicating geometrically.

I would also like to grow some amoeba. But I am not sure how to do that. Probably the same deal.
Looks I may be gaining weight. The fickle and ancient bathroom scale which previously gave a reading of 126 on Dec. 24 last night said 135. Subtract a pound for the glass of protein powder I had just consumed, and you are at 134. That would be good news. And I think some of it is muscle. The second day of Burger King food left me feeling kind of bad, so today I switched to a large two-cheese sandwich on sourdough, with mayo, lettuce, tomato, and some taco-sauce fried turkey meat. I need to acquire and start pounding down some fruit juice though. Lots of simple carbos there. All this typing has got to be good for my finger extensors, if not your eyes.
Mars Rover

Looks like I'm not the only one with brain damage.
Yoga Mat

My lovely wife got me a yoga mat. Thanks, sweety.
Movie Review

Every once in a while someone can send and email that just hits the spot. My brother-in-law knows just what to say about the DVD home movie I made:

We watched your movie last night.


I'm really impressed that you did not over use zoom in videoing, or transitions in editing. This is not normal for a first try. You showed great maturity.

The movie is a great documentary of a special day in the life of your son. I'm sure he will treasure it as an adult.

Your composition showed natural continuity without editing. The 'headless' style even seemed to change the viewer's perspective to that of a smaller person, apropos for this documentary. The 418 subplot was cool, as was your delicate use of subtitles and narration. My favorite device was the subliminal lens cap. (I'm impressed that your lens can focus on the back of the lens cap)

But the most superlative performance was of the cast. My compliments to your casting director.

Cool movie! You seem to have a natural talent for this. Please do more.


Wednesday, January 21, 2004

Egyptian Menace

One of the healthy things I have been doing recently is playing beloved old computer games that are a complete waste of time, and which I have not played in years. This makes me feel good but I am thinking that this phase will end soon and I will be spending a lot of time in libraries and on the internet doing medical research.
I was walking down the street to pick up my son from preschool (my Mars Rover presentation this morning went off very well!), and a neighbor pulled out of her driveway and waved at me. She is a nice person and I like her. She paused, rolled down her window, and said "You are inspirational!" That made me feel nice, but I think she is laboring under a misapprehension. I can still walk, so I am going to pick up my son. I don't know what else I would do. That's not inspirational. Sure, some people might conceivably sink into passive depression or substance abuse or something. But I think most people would do exactly what I am doing now. Just living.

It is hard to believe that the ALS diagnosis is real, or, even if it is, it is hard to believe that I will die, or even be disabled in a serious way, by it. Famous last words perhaps. But what I am hoping is that the people at the ALS center look me over on the 28th and say: "No, you don't have ALS, you just have a semi-paralytic condition caused by stuffy sinuses and an excess Kavorka score. You not only will not die from it, you will have to fend off an annoying flurry of winning lottery tickets. Get out of here!"

The neurologist I have been seeing wants to do the EMG test on me Friday the 23rd. This is the one where they stick some small needles in you to oberve the electrical behavior in your muscles. Apparently ALS comes with microscopic twitching. Even if the results are consistent with ALS, my response will be that I will defy the condition.

My son is calling for me. We are going to look at a winged insect under the microscope I got him for his birthday. He is only 4 but he handles it quite well. I am trying to grow some micro-organisms in a jar of water and mud I prepared a couple of days ago. It was tap water though, so that may have killed off some of the animals. I am hoping for amoeba and, my favorite, protozoa (is that the right word? Shoot! I mean the one that looks like a shoe. Um... darn! I will think of it later.).

A friend, who let us just say would not be caught dead in a Burger King, who follows a strict but indescribable set of dietary proscriptions, and who has been very kind to overlook all my dietary adventures while keeping his mouth shut, nonethless writes with genuine concern:

"Has any doctor recommended to you that it would be a good
idea to start putting on weight?

My first thought, and remember I've read only a little about
ALS and only 101-level stuff, would be that weight gain
would either accomplish nothing or even make things worse
for you."

Here is my response:

I am trying to put on muscle, since my muscles are atrophying. I have an abnormally low percentage of body fat, so I want to attain a normal level of body fat in order that my metabolism does not digest muscle when I am hungry. Weight gain, for most Americans, is inadvisable. In my case it is what I want to do and what I intend to do, regardless of what any doctor says. Please do not be offended when I type this in all caps. I am not shouting at you. I am shouting with ferocity: "IF I DID ONLY WHAT THE DOCTORS TOLD ME TO DO I WOULD BE DEAD IN FOUR YEARS!" The experts know how ALS is supposed to progress, and the progression leaves me dead. So fork them and their opinion about what is "useless" or "makes things worse." They are not the ones who are going to survive through this thing or extend it. I am. Their advice is advice for dead people.

I hope the foregoing doesn't sound too irrational. Rest assured, I do value the advice of doctors and continue to seek it out. But I will not let myself let them circumscribe what I do in order to survive.
The day before yesterday I went for a run with my lovely wife, and we dropped by the local middle school track to time my performance in the "100 yard" dash. I put quotes around that because, well, we're not sure exactly whether it is 100 yards. It's the straight portion of a quarter-mile track. We thought a sprint would be the best baseline metric against which to compare future performance, since the problem in my case manifests itself most dramatically in slowness of movement. There is also some weakness but it is not as marked. I did the dash in 16.19 seconds. Cateye? Thrill? How about youse guys? Now, way back in, I think, 1996 or thereabouts, I did a 100-yard dash in 13 seconds and some change. The sensation of this 16.19-second sprint was, I don't know quite how to describe it, like, well, like the signal was not getting to the muscles. I know that my muscles, heart, and lungs are quite capable of running faster than I did. But when I sent the "go!" signal, the left leg just kept chugging along at half speed.

My weight room performance is progressing well and I feel that I am getting stronger. The amounts that I lift, and the number of repetitions in increasing. I really should make a note of it next time, so that I can enter it in the blog, and have another metric. I also do the rowing machine. But I think I overdid it last time, as I now have a tickle in my throat.

I am worried about what might happen if I get an ordinary cold, flu, or simple limb injury. That would have the effect of putting me out of action for a few days or weeks, while the Mystery Condition continues to atrophy me. Basically, I want to stay strong so that my normal healthy body processes can respond to the new exercise routine and build me up. Because of what an ankle injury would do to me, I have decided not to play serious basketball. Like, no full-court pick-up games with a bunch of teenagers.

Today, I have a very important presentation. I am going to give a little talk at my son's preschool about the Mars Exploration Rover (Spirit), and show them pictures. Everyone will get a little wallet-sized color picture of Mars. Not that any of them have wallets!

Tuesday, January 20, 2004

Burger King
It occurred to me that my local independent burger joint might be serving food that was a little more healthy than one of the mega-chains. So after mailing the birthday DVD to family, visiting the doctor's office to fill out forms, and buying some dumbells at the sports store, I went to the Burger King drive-through and ordered the Double Whopper with Cheese value meal (#2). They had three sizes and I chose the middle size. It turned out to be a lot of fries and Coke, plus, oh by the way, a burger. That makes sense from the corporate perspective. Fries and Coke are super cheap to make and if they could, they would sell you just those. Because the margin is better. But people want a burger, which costs more to make, so while they do provide one, they swamp it in fries and soda to fill you up. I really want to gain weight and I have been super-lean my whole life. So I am in the ironic position of eating poorly for health reasons. Survival reasons.

Sunday, January 18, 2004

Just jogged back from a workout and my first yoga class ever. Yoga is not an easy thing. I don't even do stretching when I run. I took it easy but almost fell over a couple of times, due, I think, to the weightlifting immediately prior. Maybe I should separate those. Phew! Hungry.

Saturday, January 17, 2004


Today I took a break from lifting and running so as not to shock my muscles. They have that goodly stressed feeling. They need a chance to recover. I also made a point, after lunching on a tuna sandwich, to go to the local independent burger joint and order a cheeseburger, vanilla shake, and french fries. I almost ordered the turkey burger, because of the BSE cases among American cattle, but then I thought that it might be fun to have two diagnoses at once. I got halfway through the vanilla shake, my stomach complaining, before I remembered that I am allergic to milk (and hence ice cream)! But I ate the whole burger and some of the fries.

I just finished making a completely poorly-shot and poorly-edited DVD of my son's 4th birthday. Incredibly bad camera work and production values. But I wanted to make one, never having made one before. I will send copies to the family.

I told a buddy of mine about the ALS allegation and made the usual joke that this explains why I am such a poor shot at basketball. He made me laugh, and feel good, when he wrote back:

"You may have never had the wherewithal to hit a jump shot on a consisent basis but from what I've seen you do have the internal fortitude to make the best of any situation."

My buddy is a pretty good shot. I loved playing basketball. I have a good memory of feeding him the pass at the perfect instant just as he charged into the lane, and he scored the winning point. It was great timing. It's a priceless memory.

I loved playing basketball. I was a terrible shot but I was very quick, and my reflexes were so good, that I prided myself on playing excellent defense. In a typical game, I would take the best player for the other team and make it my mission to make sure he never scored. Not always possible, but quite often I could make him a non-factor in the game just by making sure he was never fed the ball. My intent, and I believe my impact, was to cover him so closely and with such a threat to steal the pass, that the pass went somewhere else. Pat pat pat. That's the sound of me patting myself on the back.

Thinking about the good things in the past, or the good future things I want to do with the people I love, is not easy. It makes me start to lose my grip. I have tried to begin a practice of avoiding thinking about it. If I focus on today, I am OK. Because I have a large capacity for contentment, and quite frankly, on any given day I can feel good. I have felt good today. It's the good feeling you get when you have been ignoring your workouts for too long and you start getting regular exercise again. I feel better.

Just don't think about tomorrow, or yesterday.

Wait, writing that line above made me remember something I wrote a long time ago. Listen, I need to fess up to you, especially my guy friends. I am (avert your eyes) ... um, a ... uh ... OK let's just admit it a poet. ("Aww fer criminy! Aww sheesh! Why'd he have to go and say dat? I thought he was a right guy!!")

And here is something kind of apropos that I wrote waaaaay back in 1996, before I was married. When I was all alone. Single:


this piece of lettuce is wrinkly and pale

will my flesh be like that
as it drifts from my skeleton
deep in the ocean where the plane went down?

I discovered some new wrinkles here
I am not charmed by mortality and by making
the best of what you've got

may I please have the best of everything and forever now
seeing as my writing will not live after me
as my deeds will not live after me
and very few people know me or care?

the suffering of others does not scale my suffering
though it does comfort me to think of diseases I don't have yet
or know about having yet
and dictators don't torture me

just don't think about tomorrow, that's all
that's the main evil
and don't think of yesterday
or now



Friday, January 16, 2004


Don't think there hasn't been any weeping. (Sorry to the mens out there, I should have warned you to avert your eyes. But stay with me, I'm gonna need you later to defend me on the misogyny charge). My wife has been very good about weeping with me. Twice now I guess. I am glad the kids haven't seen it, because it would scare them. Anyone with ideological advice about how sorrow is a healthy part of the human range of emotions that children need to see acknowledged can stick it right here: * ). My son has seen my crying (so there!), big time, about 8 months ago, after I dropped the baby by accident onto the floor. (Yes, left arm). I cried, and I was glad he saw me cry. But he would not understand why Dad comes home from the gym and starts weeping. Fortunately he was napping.

The scene of the crime for both the theft and misogyny charges was the weight room at the gym. To put this all in context, before I jogged to the gym, I was reading on the web about the progression of ALS, and I get the impression that it can be very rapid. Like, one day you can do something, and the next day you cannot. That's why I want to get some video of me "playing chase" with my son. That's where we chase each other around the house. Today my wife got some video of me swinging my baby daughter in my arms. She may need to see that in later years if I am rubbed out like a frigging mayfly before she even forms permanent memories of me. (I said, "if"). Yes, my attitude is positive, but sometimes you gotta freak out. So on the positive side, let's start with the good news. I jogged to the gym, left knee kinda low-steppin', and immediately curled the 15 pound weight on the left arm 10 times. No problem. Great. I moved around all the weight machines and generally used the same weight setting as whichever woman was on the machine before. I also purposely did some reps where the left arm or leg had to do all the work, because I notice ol' lefty is letting righty pick up the load.

I also did some free weights which reminded me of when I was 20 and lifting weights in the dorm. I honestly don't remember how much weight I had in each hand when I used to do a free-weight lift lying on my back. Maybe it was 30 pounds? 35? Maybe I am retroactively inflating the amount. [8-30-04: I found today a note I wrote about my lifting in 1992. At that point, at the age of 29, I did 36 lateral presses with 25 pounds in each hand.] And yes, I know that we can't stay 20 forever. We all age and get weaker, I accept that. But, dang, as I was lying on that bench, doing the same exercise with little 10-pound weights, and having a hard time doing it I was amazed at how weak I had become ... without knowing it! I got nothing against people being weak, or myself either. But the sudden transition, that sickening, scary, atrophied feeling, made me feel like a theft had taken place. A sudden theft. In the course of, who knows? Maybe a year. I noticed myself starting to get a little self-pity coming on (and guess what? That's an OK thing too). But I got that under control.

Now we enter in to the dangerous misogyny territory. It arises because I saw this young woman about maybe 30, lifting 15-pound weights on each arm in what looked like a good exercise. Kind of a rowing motion when you are bent over. That seemed good to me, so I took some 7.5 pounds weights and tried it. You can say all you want about how she probably started at 7.5 pounds too, and she probably does it every day and you are new to it, yah-dee ya-da, neener neener, I am not listening ... because, and ladies may not understand this, though I think those of you who know me know that I am not a macho guy, and I am quite comfortable with the fact that many ladies are stronger than me ... because, I could barely lift half of what this woman was lifting. And she was no gym tigress! She was no buff gal! She was no weight lifter! Just an ordinary, yoga and popcorn kind of lady person. A small lady person. And there I was struggling to lift half of what she could lift. It was not what I expected. I picked the weights that were half of hers because I was humble and assumed she was stronger and more used to it. I still could barely do it.

Picture a beach as the wave is just rushing back to the ocean. Now, you try to restore the shore to its former position using a squirt from your sports bottle. That's what I felt like, that's what I feared I was doing, sitting there lifting weights at the YMCA. I left quickly before I started weeping. I sat down in a doorway when I couldn't see in front of me. I jogged pretty much under control till I got home. I collapsed in this room and my wife came to comfort me.

My sister, my big sister who used to be able to protect me from anything, is out in the other room. And she can't fix me.

Thursday, January 15, 2004

There I thought I had had a good eating day. But two friends wrote me saying almost the same thing. I quote from one...

"...[N]o man has ever gained weight eating tofu and fruit. Your diet sounds like it should be in Glamour Mag's Seven Ways to Slim Down Before Summer article. You've been eating too healthy ... for so long you don't even notice that you're eating healthy and low fat.

If I may make a few suggestions:
Breakfast: Bagel with cream cheese and jam. Lots of it. Cup of tea with milk and honey.

Snack - Cheese and bread. Or hell, go ahead and eat the whole Toblerone.

Lunch - Hamburger with all the fixins. Potato salad. Big glass of Coke to wash it all down.

Snack - bowl of ice cream. Full Fat, please.

Dinner - Pasta with some kind of cream sauce. Some salad, but one with lots of avacado and a nice oil and vinegar dressing.

Dessert - anything sweet and high fat.

For added pounds, have two children and begin middle-aged sedentary lifestyle."

After I received this email I looked back at my day's gustation posting, and it seems pathetically twig-and-leafy. But I cannot easily undo my sin. First off, I am allergic to chocolate, in a way that has to do with the lactose intolerance. But I love bagels with cream cheese. And I do have two kids. And I am middle-aged. But not sedentary. Sorry, but 'sedentary' conjures 'atrophy' in my mind, so I'll stay active for now (heh heh!). I do love Italian pasta with cheesy sauces. And pesto is good too. Lots of olive oil. That's got to be good? Can I get a witness? But I stopped liking desserts when I was about 14 -- too sweet. I don't like ice cream: too sweet, and too cold. Hamburgers are delish, but if you have read Fast Food Nation you might not want to go to let the feedlot downers into your stomach. Avocados I love. Oh, my, yes, I do! The heck with the salad, I prefer raw spinach! Potato salad? OK, maybe, but I prefer macaroni salad (without the vinegar!). Coke. Feh! That's a ton of oxidizing poison. Sheesh. But I have toyed with the idea of drinking milkshakes. Although that does not appeal to me too awful much.

In summary, before the committee, I humbly apologize. I will endeavor to eat some fattier stuff soon.
Some of you have found the blog disturbing or alarming. Here is an entry guaranteed to bore your socks off. It's what I have eaten so far today. If you manage to get through it, feel free to comment on whether you think it is good/bad, too much/too little. Blah etc. blah:

Breakfast: quarter pound tofu, 2 pieces whole wheat toast with butter and strawberry jam, half an apple, half a banana, two spoonfuls of kiwi fruit.

Mid-morning snack: raisens, cheese, some leftover vegetarian thing based on lentils

Lunch: Tuna sandwich with tomato, lettuce and cheese. Whole apple.

Post-workout snack: leftover Indian food (1 plate of basmati rice with some spinach chicken and some curry pork).

Late-afternoon snack: eggbeaters, two slices of sourdough toast with butter and strawberry jam.

Dinner: not sure what dinner will be, but last night was cornflake chicken, mashed potatos and green beans. I made a point of eating two pieces of thigh+leg chicken instead of just one. Then after dinner I will have one glass of that protein shake that gives you 68% of the daily protein requirement.

As usual, the only thing I drank all day was water. Once in a while I will have some fruit juice.

...I list these in part because I think I did a good job of eating today. But this is by no means excessive for me. From time to time over the years I have tried to eat as much as possible while working out, in order to gain weight. I have always remained a stick-man.

You know what? I think it is time for the big revelation. It's time to tell people how much I weigh. Seeing as I am a Victim and all. But this is no small thing for me, because, when you are freakishly thin, people are always asking you how much you weigh. Aside from the fact that it is none of your damned business, I just don't like being a subject of idle curiosity. So since, I think, high school, I have always made firm policy of never answering the question. A typical conversation would go like this:

Person: "So how much do you weigh?"
Me: "Why do you ask?"
Person: "Just curious."
Me: "OK."
Person: "So how much do you weigh?"
Me: "Why do you ask?"
Person: "Just curious."
Me: "OK."

Repeat as necessary.

...You would be surprised that some poeple will repeat this cycle three or four times until they realize you are not going to tell them, and then they get angry. Actually, I never do this to people anymore. The last time may have been in high school. But the point in this passive-aggressive response is that it is OK for you to be idly curious. And OK for me to not satisfy your curiosity.

I guess I'm kind of prickly and private.

Anyway, bathroom scales are notoriously fickle, but when I was, like, 20, I weighed 120 pounds. You could see my pelvis like a salad bowl. I labored hard to gain weight and got up to 124 pounds, largely as a result of getting a little older, I think. I remember being exhuberent when I reached 124 pounds. A victory. So then the years went by, I got a little older, at one point I went through a phase of regular weight-lifting, and I used the creatine, I must have been about 30, and I got up to 136 pounds. Woo hoo! That was awesome. I rarely weigh myself, because I don't have time, and I guess my metric was how much exercise I was getting and whether I felt and looked robust. However, the day before the MRI scan I weighed myself on a fickle old bathroom scale at 126 pounds. Today, when I went to the YMCA, I stood on the scale in my shoes and all my clothes and it put me at 138 pounds. So I assume I weigh about 130 pounds.

I will do a lot of eating and working out and see if I can get that number up.

So I jogged to the sedate, middle-aged YMCA today, and joined. I wondered how many of the handful of other people who were there, were also there for medical reasons. My objective was to try out all the machines, lightly, and maybe get a mild workout. And I did that. I was amazed at how weak I am generally and how weak the left side is. OK, maybe you can say that I have high expectations, maybe those expectations are still rooted in when I was 30. But when you literally cannot curl a 15-pound weight with your left arm, and your right arm just pops it up with no problem, it seems dramatic. That was at the end of the light workout though, so I will try it at the beginning next time. Still, the right was able to do it and not the left. Differential. I am not wanting to make you people all depressed, because I actually feel upbeat. I have my cheater drugs now and my protein powder, and I will be running and lifting every day, pretty much. So I assume I will get stronger. The endurance bike was a laugh. I got on and set it to level 10 out of 12. I lasted for like 90 seconds. I may be inventing self-flattering memories, but I think I remember back in the day, getting on a bike like that and setting the level way high, and breezing through it with contempt.

The video project is going well. I made a very short movie of the kids. The more daunting task is the A2D conversion, and I tried that with no success. I'll try again tomorrow.

My neurologist was none to please with the lab which performed the tests whose results I have already written about. "Unbeliebably," my neuroologist wrote in a letter to my GP, the lab "failed to honor my clear typed request for a cell count! Despite the freezing and saving extra CSF this can no longer be done. It is unclear whether they ignored my request for bacterial and fungal cultures."

They have been reminded to do the fungal and bacterial cultures. And they are doing viral but that takes many days, in excess of a couple of weeks I think.

In his letter, my doc goes on to say he sees "visible atrophy" on the left side, and upon reconsideration, I have to agree with him.

If I take a deep breath, the right side of my head throbs in a little mini-headache.

The cell counts in the CSF (which the lab failed to perform) is to detect any white blood cells (there should be zero), the presence of which may indicate an infection. Low glucose in the CSF also may indicate an infection. So here we have one clear reading (low glucose) that indicates an infection, and they failed to do the other test which might shed light on that. True, the neurologist says that I most likely do not have a bacterial infection, because that would leave me in a bad way very fast. However, this is a thread, a bit of evidence, and it needs to be followed. After I am tested by the ALS experts, if they reject the diagnosis (which would be good), then, in order to get the cell counts, we may have to do another spinal tap (which would suck).

For the curious, no, I don't want to sue anyone. I need to find a place to lift weights. I am having trouble getting things out of my left pocket.
> I am curious to know what the next steps are to find out if
> you actually have ALS. Is there a definitive test?

I don't know about definitive, but there is this thing called the EMG where they stick needles into your muscles to observe electrical behavior and look for microscopic twitching. One the one hand my MRI does look like an ALS MRI, and the weakness is typical of ALS. But the tingling and numbness are not, and there is still that low CSF glucose level not equal to blood glucose. If I am lucky then something or maybe multiple things are happening that just make it look like ALS. But even if it is ALS I intend to win.

Looking at the clinical trials I have this gut instinct to trust anything done by a university or foundation as genuine, but distrust anything done by a pharma company as a crude attempt to see if some drug they already have a patent on might help in ALS. As Grandmaster Flash said, "It's all about money, ain't a damn thing funny."

Today I will join the YMCA or a gym, and also pick up some cables I need to download pictures from the new digicam to the computer. Also maybe some other things. Then I have kidwatching duties.

I will also call I guy I know who, years ago, had a mystery degenerative neuromuscular disorder.

OK, I just called him. He has some kind of autoimmune disorder that attacks the peripheral nervous system, not ALS. He asked if I had a network of good people and I said, emphatically, yes. I told him I had been reading about his projects in the newspapers, his art projects, and his advocacy for the homeless. I'll send him and email.


Wednesday, January 14, 2004

Friends informed my dear wife that Stephen Hawkings was diagnosed with ALS in 1953. And you may have noticed that he is still ticking.

I woke up this morning thinking about drinking olive oil (I did) and lifting weights and using creatine. I went to the GNC store and got some creatine, and also a protein drink. I don't want the protein drink to put off my appetite for real food, so I think I am going to drink it only after dinner. My goal is to gain weight and muscle mass. Sure, I know that if the nerves leading to the muscles die, the muscles will be useless. But the idea is to build up the muscles so that they are more capable of performing the task they are ordered to do, if the signals get weaker. Like, uh, having more demonstrators to crash the gates even if the megaphone of the People's Leader runs out of batteries. There are currently three clinical trials looking into the effect of creatine in ALS. I don't want to be in these trials because (a) I might get the placebo and (b) I would be able to tell if I got the placebo, because for a few weeks back in the early 1990s I took creatine while lifting weights. They probably ask you that when you apply for the trial, and screen you out. Back then when I tried it, it did help me add muscle mass. I stopped taking it fairly soon though because I felt that it might be making me aggressive. Or at least, kinda wired. I don't know what the dosage being used in the trials is, but the bottle I purchased at GNC tells you to take 5 caplets of 700 mg each. I started today with 1 caplet.

I plan to join the YMCA or a gym tomorrow, so I can start lifting weights for the first time in about 7 years. You may think that the creatine inauguration puts the cart before the horse but (a) don't forget the psychological effect of thinking you are doing something and (b) it's my body to poison as I see fit, so you shag off. ("Is he already getting aggressive?"). Ironically, just this summer I got rid of my last free weights, thinking that I would never lift again.

The appointment with the ALS experts is scheduled for January 28. And I am going to see a xxxxxxxxxxxx in early February about a possible problem with my xxxxxx. For those of you who don't know, a xxxxxxxxxxxx is a kind of doctor who specializes in problems with the xxxx and environs. For example, if you have xxxxxxxxxx.

In other good news, the digital camcorder has arrived. In the great male tradition, I figured out how to use it and play back the images without reading a single bit of the instructions. OK, maybe this speaks more to the user interface skills of Sony corporation than to my innate techie prowess. Next I am going to try to transfer those images to my wife' computer, edit them, and burn hem to a CD. Then comes the real purpose of this: to use the digicam as an A2D converter, and finally edit my videos of my kids before my son is five. All this comes at a cost: the pollution of the environment..

(Yes, I use a Mac, Cateye, so get off my frigging back! ("Is he already getting aggressive?"))

In the category of really wonderful news, I went for a run with my wife today. And then we had lunch together. Some nice Indian food. It has been too long since I had a chance to spend unharried one-on-one time with her. I am thinking of dating her more often.

I had an IM conversation with my very cool boss, and he is not pressuring me but also understandably wants to know whether the doc will declare me disabled, and whether or when I want to kick in use of my accrued vacation time, and whether or when to go on disability. I called the neurologist to see What Is Done, because I frankly don't know, never having been in this situation before. I mean, I suppose I could work, and perform my job in my usual exemplary and sexy manner. But I need to get my act together on the diet and exercise, not to mention research. And being in a commute for two hours a day and sitting there at a desk worrying about other peoples' problems while my body quickly deteriorates due to lack of attention, just does not make sense. It could kill me. But then, this is America, where in some cracks you can get stuck in, they expect you to spend every dime you have before they will help you, and be dying before you get a Band Aid. Fortunately I am not stuck in one of those tracks. But I wouldn't be surprised to catch a whiff of that at some point. I can't really waste time or Chi thinking about it, be that as it may, I have to take care of me right now. Let Draccus be Draccus, if so he may wish. I will be Bambi.

To refine or perhaps correct my previous stated stance towards this diagnosis: I hope the further tests show it to be wrong, but even if it turns out to be correct ... the idea of me dying or wasting away to nothing is what I call "the Script." Rest assured I do not intend to follow the Script. My goal is to embarrass the Script.
Gilbert's Syndrome
For the curious, or for extra credit, the GP I went to yesterday explained the abnormally high bilirubin count in my blood. He said I have a harmless condition called Gilbert's Syndrome. I have never had any of the symptoms listed on the hyperlinked page. I have not even turned yellow once. And I still have five fingers on each hand, not four, and I exist in three dimensions.
As I said at the begining of this blog, I am very fortunate. I live in an advanced country with lots of comforts and I have access to good health care. I have a great family and enough to eat. Consider those around the world who die instantly in Earthquakes, or agnoizingly due to starvation, war, disease, or other afflictions, or those right here at home who are in the throes of cancer or Alzheimers. I know I am lucky. But the suffering of others does not relieve me from the responsibility of trying to improve my own lot. This is the only quarter I have, so I play it.
When Bad people Do Good Things
It's great that "President" George W. Bush wants to establish a Moon base. Like most cynical political gestures, this may well wind up on the scrap heap. But even if it doesn't, I will be proud to say I voted against Bush in 2004. And gleeful to say it, if he gets defeated in November!
OK, down to business. Bushra wants to know what I will do next, and at the moment the answer is to take some time off work to do my medical research, get my exercise and diet routine together, and just generally have more time for myself and my family. Cateye says he thinks I write well. Thanks for the complement, Cateye! I do enjoy writing and I consider it therapeutic (with a value just slightly below that of access to oxygen), so you can be assured you will see a lot more typing from me. Maybe too much typing. But also, Cateye, I love coding too, and I have several projects I want to work on, free websites for playing games I want to write. Before I turned into a Victim, Ronolulu had offered my little family to stay in his guest house in Hawaii. Not sure of departure date yet, but my wife likes the idea that we should go out there. (That may not have been proper grammar but it felt better.) Laurie (and others) have wondered how I am doing. You may find this surprising, but I am doing fine. SUre, a little freaked from time to time but at a level of 2 on a scale of 10. The only things that warps me out of control emotionally from time to time is thinking about the effect of this on other people. I'm no saint, friends, but please accept that I am pretty stable, and it only worries me if I think you are freaking out. Lastly comes Anna-who-you-do-not-know. She provides really excellent links and probably just saved me a lot of time. Talk about the power of the internet! Anna-who-you-do-not-know, may I ask you a couple of questions? Is there a web ring for medical problems? I bet there is. How about specifically for ALS? Also, Anna-who-you-do-not-know, tell me a little about you and your mission ... do you surf the web as a public service, helping people who write about their medical problems? And which one do you have/had/know someone who had? I thank you for your advice.

As you all know, I am going to do real research, and talk to my doctors. But as a symbolic gesture (and those are important if they make oyu feel good), I got up this morning and drank a fair quantity of olive oil. I also think I will stop eating eggs (just for a change of pace, I have had two eggs for breakfast since I was seven years old.) And I woke up thinking about the weight-lifting I want to do ... and thought about the creatine stuff that bulks you up. And then this morning Anna-who-you-do-not-know adds her comment that it might be a good idea. I am not so sure, though, because it might give me cancer in 30 years. (Hah!)

Tuesday, January 13, 2004

Some people when given four years to live would rush out and complete their life's work: A novel, a ring-trilogy opera, found a new nation and declare independence from Britain. But what I did right after the neurologist laid that ALS junk on me was go feed my penny jar into one of those coin-redeemer machines. Well, and not all of them. You see, I had forgotten to get my parking stub validated. The fee was $7.50. And I only had six dollars on me. There were 85 cents in coins down in the little coin slot near the floorboard. And I had a couple of pounds of pennies in a throw-away plastic water bottle. So some lady in a Mercedes Benz SUV idled behind me while I tried to shake pennies out through the narrow neck of the water bottle. I induced them by making the farky finger in and out of the narrow neck. Eventually the attendant sensed there were enough and allowed me to drive away after I gave him a handful. We made a gesture like hands cupping water from one to the other. I had been saving these pennies up for two years. I wanted to feed them through one of those coin counters at the supermarket and get the cash. It's OK with me that the machine takes 8.5 percent, because pennies are worthless. Sure, you could get rid of them if you made a point of carrying them around and spending them, but that's not how I live my wild and free lifestyle. This ingot, as it were, of pennies had sat variously in my car or on my desk for about a year since the bottle filled up. A dream deferred. Now, as I left the neurologist's office, with a sentence of death (come and get me - hah!) hanging over my head, I resolved to feed the rest of the danged pennies into the supermarket coin machine if it was the last thing I did before I died. So off I went. The machine counted up roughly $6.38 (I think) and the machine gave me $5.70. I was expecting green bills but it was a voucher I could use at the cashier. They can give you cash if you want, but I wanted to shop. I picked out some pork breakfast sausages, laughing inside that my general practitioner that morning had suggested I go on a low-fat diet for two months to control my cholesterol. Forget that, I don't need less fat right now, I need more. The sheathing that covers the nerves is made of fat. This is why it is crucial for children below the age of two to get lots and lots of healthy fat in their diet. Myelin. Maybe not pork fat, but hey, the ink on my diagnosis was still wet, and pork fat seemed like a gesture in the right direction. Also I picked up some waffles, two for $3.40 or something if you have the evil supermarket bar code card, which I do, under a false name. So I thought. At the cashier it came to over nine dollars. I nixed one of the waffle boxes and it still came to over six dollars. So I nixed the other waffle box and went home with sausages and no waffles. And some green bills. So I accomplished my dream. I fed the pennies into the coin machine at the supermarket. You may think this is silly. And then I did go home then and tell my wife the situation. But I did the penny thing first because is was symbolic of doing something fun for me. Because it satisfied my curiosity and desire to play. This desire is the root sensation of a life properly lived, I think.
A Diagnosis

"Yet today I consider myself the luckiest man on the face of this earth."
-Lou Gehrig, July 4, 1939

Those were the immortal words the 36-year-old Lou Gehrig spoke to more than 62,000 fans in Yankee stadium. Lou Gehrig died four years later, in 1941. I think Lou, wherever he is, would forgive me for wishing I could go back in time to Yankee Stadium and be the one fan who gave his speech a great big raspberry, a thin rude sound from the bleachers as the echoes of his immortal speech died out.

Today the neurologist told me he believes I have ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig's disease.

Lou would forgive me for giving the raspberry to his speech because he would know that the enmity I feel is directed not at him, not even at my doctor, but rather, at the diagnosis. Further tests are planned, and I will visit a nearby center which specializes in ALS for a second opinion. I intend, either by living despite the diagnosis, or by getting the diagnosis changed as a result of further tests, to give the whole thing the big raspberry. To prove them wrong. This is my course.

ALS is not a thing you want to have:

ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig's Disease, is an incurable fatal neuromuscular disease characterized by progressive muscle weakness, resulting in paralysis. The disease attacks nerve cells in the brain and spinal cord. Motor neurons, which control the movement of voluntary muscles, deteriorate and eventually die. When the motor neurons die, the brain can no longer initiate and control muscle movement. Because muscles no longer receive the messages they need in order to function, they gradually weaken and deteriorate.
The initial signs of ALS may vary. Symptoms include stiffness and increasing muscle weakness, especially involving the hands and feet. The disease eventually affects speech, swallowing and breathing. Because ALS only attacks motor neurons that control the body's voluntary muscles, patients' minds and senses are not impaired.
Approximately 14 cases of ALS are diagnosed each day nationwide. Most of those who develop the disease are between 40 and 70 years of age. The average expected survival time for those suffering from ALS is three to five years. At any given time, approximately 30,000 people in the United States are living with the disease.
The cause of ALS remains unclear, and no cure exists. While there is no drug to prevent or cure the disease, recent breakthroughs have resulted in Rilutek, a drug that modestly slows the progression of ALS.

No, the doctor did not get any special lab results which confirm that I have ALS. I have not done my reading and homework yet, so I don't know if there is one. What he did was look closely at the MRI scans, by going down to the MRI center where they have them on the screens, and then tested my strength and reflexes some more today.

So he could be wrong. But I am not so much interested in proving him wrong as in defying the whole rap, even if I do have ALS. Brave words, sure, and perhaps hollow, but I think a certain amount of anger and defiance is called for here. And cunning.

As I have grown older and tried to mature my rather immature soul, I have cultivated an understanding of human frailty, the windfalls and staggering blows of mere chance (slings and arrows), our mortality, and fallibility, all in an attempt to soften my rather abrasive and fierce core personality. While I intend to remain loving and kind to those close to me, I also intend to develop a full-blown, adolescent, stanking attitude of defiance towards this diagnosis.

Part of that will be exercise. Part of that will be editing the videos of my kids (yes, I did finally order a digital camcorder to allow me to convert the analog tapes to digital, and my wife already has a computer I can do the editing on). I think in the near term (like, immediately), I may take some time off of work. I have considerable creative and organizational powers ... but I need to muster those skills on my own selfish behalf right now. Still, I haven't had much time to meditate on this, regarding what I should do with my time. So your suggestions are welcome.

My wife and I are going to go for a walk, and have a discussion. A friend has come over to have a playdate with our kids. As soon as I got back from the doctor's office, I told my wife the doc's theory, and she handled it with the calm strength and hope I have come to know in her. At this point Lou Gehrig's speech comes to mind again, but this passage I would not raspberry:

"When you have a wife who has been a tower of strength and shown more courage than you dreamed existed - that’s the finest I know. "

Monday, January 12, 2004

Today I set up the appointment with the GP tomorrow, for the X-Ray and TB skin test. That's in the morning. Then the neurologist's bright and able assistant called and said he looked at my MRI images down at the imaging center (on their computer screens, which I believe offer lots more detail), and he wants me to come in tomorrow afternoon for more tests. That basically shoots my working day to pieces (if you factor in the commute), so I have arranged for a sick day tomorrow.

I suppose he could have some dramatic and awful news he wants to give me in person, because he thinks it's funny to see people faint. But in reality I think he is just scratching around for crackpot theories while we wait for the additional lab tests to come in. He may flash some lights in my eyes and make me listen to Black Sabbath albums in a dark room lit only by a red lava lamp. To observe my reaction.

Sunday, January 11, 2004

Took a wonderful walk in perfect, inspirational weather with my son. Came across a girl of maybe twelve or fourteen on roller blades, her mother putting pads on her. These must have been Christmas roller blades because the girl was none too steady. When it came to the helmet the daughter issued a series of quiet and evasive no's, while the mom pursued a policy of gentle but firm insisting. It struck me as exactly like trying to talk a 4-year-old into whatever it is they don't want, be it to wear sunscreen or shoes or a sweater. The girl took a few baby steps in the blades and tried to tell her mother: "I'll just be like this." The mother approached with the helmet, stealthy and calm as a lion tamer. "Let me tell you a story about someone I work with..." she was saying as my son and I moved out of earshot. I mentally completed the story of the person with the steel plate in their head who drools out of one side of their mouth.

Saturday, January 10, 2004

Goofed again
Flash Alert: I got the HDL/LDL good/bad definitions reversed. Apparently the "bad" cholesterol is what I have LOTS AND LOTS of, and the "good" cholesterol is what I have the maximum normal of. Dang. More on this topic later. Shoot and dang.

Friday, January 09, 2004

Tick tock, talk with the Doc

The neurologist called. "I thought you were going to have MS."

But he said the multiple sclerosis results are normal. I don't have MS. He says he is also happy that my protein counts are normal, because abnormal protein counts can be caused by a lot of conditions.

He said that he asked the lab for several things which they have not performed and did not even put on the report as "pending." But he did ask them to freeze and save my spinal fluid sample, so hopefully I won't have to have another spinal tap. That would suck. Or poke. Or whatever. Anyway, he and the able assistant are going to jump on the lab people and make them produce:

bacterial and viral cultures of spinal fluid
cell counts of spinal fluid
fungal culture of spinal fluid
tuberculosis culture of spinal fluid

He also wants me to go to my GP and get a TB skin test, and chest X-Ray.

The doc cleared my mistake. See, the lab report lists a glucose level of 55 for the spinal fluid. But it lists a glucose level of 72 for the blood serum. The normal range is 70-115 for both. So my blood sugar level may be low, but it is within normal range. I made a, um, mistake. Cateye, does this sound similar to numerous incidents in the past? (By the way, thanks for the official blog logo, Cateye.)

The doc said that spinal and blood serum glucose counts are supposed to be equal. A ratio of 1:1 is expected, but his textbook says that at worst they are supposed to be within a ratio of 6:10 spinal:serum. And I am within that ratio. If they are not equal, you may have a bacterial infection in the spinal fluid (which bathes the brain as well).

However, he said that a bacterial infection would have shown up very brightly on the MRI. And it usually has sudden, severe consequences.

So he said he is going to have the radiologist take my MRI to some kind of association meeting those guys have on a regular basis, to show it to the whole gang and see if anyone has any bright ideas. He said he did not go down to look at the MRIs in person as he thought he would.

I liked it that while we were on the phone, the doc did some research on Google, and admitted it! This guy is no faker. Then he flipped to his textbook and found that viral infections do not typically consume glucose like bacterial ones do.

He said that in 25 years, this is the first time he has seen a low spinal glucose count. "I can't think of being this mystified in a long time," he said. "This case is still a mystery." He also said that if he can't figure it out, he will refer me to the wizards at the UCSF medical center.

The reason he suspects tuberculosis, other than it just being on a list of possible syndromes, is that I recalled going to Prague in 1996, getting a horrible flu, and coming back with a bad cough that took months to recover from. And now, whenever I get a cough, it seems to drag on for weeks if not months. Tuberculosis? It's highly infective. So why don't my wife and kids have it? Maybe they do.
Tick tock, Talk with the Doc

The neurologist called. "I thought you were going to have MS."

But he said the multiple sclerosis results are normal. I don't have MS. He says he is also happy that my protein counts are normal, because abnormal protein counts can be caused by a lot of conditions.

He said that he asked the lab for several things which they have not performed and did not even put on the report as "pending." But he did ask them to freeze and save my spinal fluid sample, so hopefully I won't have to have another spinal tap. That would suck. Or poke. Or whatever. Anyway, he and the able assistant are going to jump on the lab people and make them produce:

bacterial and viral cultures of spinal fluid
cell counts of spinal fluid
fungal culture of spinal fluid
tuberculosis culture of spinal fluid

He also wants me to go to my GP and get a TB skin test, and chest X-Ray.

The doc cleared my mistake. See, the lab report lists a glucose level of 55 for the spinal fluid. But it lists a glucose level of 72 for the blood serum. The normal range is 70-115 for both. So my blood sugar level may be low, but it is within normal range. I made a, um, mistake. Cateye, does this sound familiar to numerous incidents in the past?

The doc said that spinal and blood serum glucose counts are supposed to be equal. A ratio of 1:1 is expected, but his textbook says that at worst they are supposed to be within a ratio of 6:10 spinal:serum. And I am within that ratio. If they are equal, you may have a bacterial infection in the spinal fluid (which bathes the brain as well).

However, he said that a bacterial infection would have shown up very brightly on the MRI. And it usually has sudden, severe consequences.

So he said he is going to have the radiologist take my MRI to some kind of association meeting those guys have on a regular basis, to show it to the whole gang and see if anyone has any bright ideas. He said he did not go down to look at the MRIs in person as he thought he would.

I liked it that while we were on the phone, the doc did some research on Google, and admitted it! This guy is no faker. Then he flipped to his textbook and found that viral infections do not typically consume glucose like bacterial ones do.

He said that in 25 years, this is the first time he has seen a low spinal glucose count. "I can't think of being this mystified in a long time," he said. "This case is still a mystery." He also said that if he can't figure it out, he will refer me to the wizards at the UCSF medical center.

The reason he suspects tberculosis, other than it just being on a list os possible syndromes, is that I recalled going to Prague in 1996, getting a horrible flu, and coming back with a bad cough that took months to recover from. And now, whenever I get a cough, it seems to drag on fro weeks if not months. Tuberculosis? It's highly infective. So why don't my wife and kids have it? Maybe they do.
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