Journal: Bye, Spring

This afternoon, the temp's up to a sorta humid 83, with upper 80s tomorrow and the next day. Time to fire up the air conditioner and bid a fond farewell to Spring. Call me when it's October and time to buy a pumpkin.

In the news: No Cancer-Marijuana Connection

A large-scale study has concluded that regular, heavy pot smoking (a lifetime smoking more than 22,000 joints!) does not lead to lung cancer. Snip from WaPo:

The new findings 'were against our expectations,' said Donald Tashkin of the University of California at Los Angeles, a pulmonologist who has studied marijuana for 30 years. 'We hypothesized that there would be a positive association between marijuana use and lung cancer, and that the association would be more positive with heavier use,' he said. 'What we found instead was no association at all, and even a suggestion of some protective effect.' Link.

Journal: Disappointed

Went for a follow-up at the pain clinic yesterday. As I suspected, my "pain journal" confirms that IV lidocaine didn't really do anything for me. So there I sat in the exam room with the nurse practitioner who works with the pain doc, squirming in my chair because it was about 3:30 pm, when the pain is at its worst. She flipped through my chart and sighed. "You already tried Zonegran?" "Yep." Another sigh.

To make a long story short, I'm going to taper off the Lyrica and start taking another tricyclic. Already, I can tell that taking less Lyrica is making things worse. So I'm frustrated, and apparently I'm making the people at the pain clinic somewhat frustrated, too. I'm starting to wonder if I'm the World's Biggest Baby, or, alternatively, if I'm underreporting my pain.

So far, I've not reported a pain level more than 5 on a scale of 1 to 10. See, they describe a '10' as "the worst pain you can imagine," and I've got a pretty fertile imagination, so when I try to imagine a '10', I think about having your arm ripped off or getting shot in the groin, and I think, "Well, it's certainly not that bad, is it?" Maybe it is. Maybe a 4 that last from 10:00 am until the third glass of wine in the evening is about the same as getting shot in the groin, which, I assume, only persists until you pass out or are anaesthetized.

Sigh.

technorati tag: multiple sclerosis

In the news: Stem cells for incontinence

The Milwaukee Journal-Sentinel has an article about treating incontinence with autologous stem cells. Sounds interesting, but the article doesn't shed much light on the specifics. Snip:

The treatment involves harvesting muscle cells taken from a biopsy of the patient's upper arm. Those cells are grown in a laboratory for seven weeks, and a small amount of collagen is mixed in. 'What's nice is they are using the patient's own cells,' said [Dr. Elliott] Silbar, who was not involved in the study. 'You are not going to have any problem with rejection or diseases. It's totally biocompatible.' What is not known is whether the new cells become functioning muscle, as is theorized, or whether the injections are just providing bulk, as is the case with other treatments, Silbar said.

The extracted cells become both myoblasts, or the precursor to muscle cells, and fibroblasts, a type of connective tissue cell. The fibroblasts were injected into the urethra, the canal that carries urine out of the bladder. The myoblasts were injected into the rhabdosphincter, a ring of muscle around the urethra that acts as a valve. Link.

In the news: NIH vitamin report

A panel of the NIH has issued a "state-of-the-science" report on the use of multivitamin supplements. Snip from Seattle P-I:

Worried about bottles that promise 53 times the recommended daily consumption of certain nutrients, specialists convened by the National Institutes of Health called Wednesday for strengthened federal oversight of the $23 billion dietary supplement industry - especially efforts to pin down side effects.
....
Ironically, the NIH panel concluded, the people most likely to have nutrient deficiencies are the least likely to use multivitamins. Link.

A draft report from the panel makes the case for additional government regulation of the vitamin/supplement industry:

In systematically evaluating the effectiveness and safety of MVMs on chronic disease prevention, there are few rigorous studies upon which to base clear conclusions and recommendations. Most of these studies do not provide strong evidence for beneficial health-related effects of supplements singly, in pairs, or in combinations of three or more. Within some studies and/or subgroups of the populations, there is encouraging evidence of health benefits, e.g., increased bone mineral density and decreased fractures in postmenopausal women who use calcium and vitamin D supplements. However, several of these studies also provide disturbing evidence of risk, e.g., increased lung cancer risk with beta-carotene among smokers.

The current level of public assurance of the safety and quality of MVMs is inadequate, given the fact that manufacturers of these products are not required to report adverse events, and the FDA has no regulatory authority to require labeling changes or to help inform the public of these issues and concerns. It is important that the FDA’s purview over these products be authorized and implemented.

Journal: Three days after IV Lidocaine

Well, if I received some benefit on Monday, it's over now. Is it possible that it hurts worse now than it did before the Lidocaine? It's pretty discouraging. And I won't be back at the pain clinic for another week, and what can they even offer me? Before the Lidocaine, the pain clinic neuro told me that the remaining treatment options came with significant downsides in terms of side effects. This has been the kind of day when I shuffle through the literature on my employer's disability benefits, thinking in a slightly less abstract fashion about how much longer I can put up with the discomfort.

technorati tag: multiple sclerosis

In the news: My Pain, My Brain

Here's something timely in the NYT: an article about chronic pain and the use of fMRI feedback to control pain. Snip:

A newer form of M.R.I., functional magnetic resonance imaging (f.M.R.I.), used with increasingly sophisticated software, is accomplishing this, taking 'movies' of brain activity. Researchers are able to watch the brain work, as the films show parts of the brain becoming active under various stimuli by detecting areas of increased blood flow connected with the faster firing of nerve cells. These films are difficult to read; researchers puzzle over the new images like Columbus staring at the gray shoreline, thinking, India? Most of the brain is uncharted, the nature of the terrain unclear. But the voyage has been made; the technology exists. Pain--a complex perception occupying the elusive space spanning sensation, emotion and cognition--is a particularly promising area of imaging research because, researchers say, it has the potential to make great progress in a short time.

Link.

Journal: One day after IV Lidocaine

Yesterday morning, I went to the hospital's Ambulatory Procedure Center for my trial of IV Lidocaine. I was ushered down a big sort of hallway to one of a down little curtained alcoves. After a brief exam by the neurologist, a friendly nurse started an IV, hooked me up to a blood pressure cuff and pulse-ox monitor, and administered a syringe marked 'A'. The first dose is 'blinded' such that neither I nor the nurse knew if it contained Lidocaine or saline.

About 5 seconds after she started injecting syringe 'A' into my IV, I could tell I was getting the real deal: I got dizzy, and my tongue started to feel like it had been replaced with a potato. That didn't last long, though. Did it relieve my pain? Well, I dunno. My pain usually comes on gradually over the course of the day; at 10 a.m., I'm usually not feeling too bad yet.

I got a couple more doses of the Lidocaine at 30 minute (?) intervals. As I lay on the hospital bed, eating zucchini bread, watching CNN, and listening to a patient down the hall gently snoring, I noticed my leg pain gradually building up to a subtle humming, though the burning sensation felt more like numbness than like burning. At about 1:00, the neurologist came back around to see me off, and explained a little more about the idea behind the therapy. He analogized neuropathic pain to a radio that isn't tuned into a station, causing static. The Lidocaine is supposed to tune the radio back into the right station, so that the brain isn't producing the static. Although Lidocaine has a half-life of 40 minutes, the 'retuning' effect is supposed to last longer. Some people experience relief lasting weeks after the treatment; others need to use a pump gizmo that administers a constant dose of subcutaneous Lidocaine.

When my wife picked me up after the treatment, I was feeling a tad wobbly, but the effect of the treatment on my pain was hard to gauge. I kept track of my pain level on an hourly basis until dinner time, but the real test would occur today as I sat at my desk and stared at my computer.

Today, I'm not sure I'm feeling any different. As I write, I've got the familiar burning pain in my thighs and butt and shins, and a warm feeling on the bottoms of my feet. I'm kinda disappointed. I'm going back to the pain clinic next week to follow up on the treatment.

I'm thinking I really ought to be looking into ergonomic solutions: I spend to much time hunched at my keyboard staring at my monitor. Perhaps if I had a wireless keyboard/mouse, I might be able to spend more time leaning back and distributing my weight more to my back (as opposed to butt/thighs only), I might get some relief. I just hate to launch into a new battle with my boss. Blech.
technorati tag: multiple sclerosis

In the news: The ADA and emotional support animals

In the NYT this morning, there's a piece about people who are using the ADA to assert a legal right to bring a dog, or a monkey, or a duck where other animals are forbidden, contending they need the animal's emotional support just as some blind people need the assistance of a trained service dog. On the one hand, this strikes me as cheapening the ADA. On the other hand, I think in this country we're way too uptight about keeping animals out of public spaces. I remember being in a little restaurant in a small town in France and seeing a family on the other side of the dining room sneaking bits of food to a spaniel lazing under the table and thinking how nice it was. And if a person is crazy enough that he feels a need to travel with a duck on his lap, for God's sake, give him the duck. Snip:

These days people rely on a veritable Noah's Ark of support animals. Tami McLallen, a spokeswoman for American Airlines, said that although dogs are the most common service animals taken onto planes, the airline has had to accommodate monkeys, miniature horses, cats and even an emotional support duck. 'Its owner dressed it up in clothes,' she recalled.

Link.

Journal: Mother's Day

Two days before Mother's Day, I was in my mom's kitchen sipping a cup of tea, thinking about how to spend to big fat check my mom had offered to write for me. Mom had recently come into a chunk of money, an inheritance from a childless uncle. A couple months ago, shortly after Uncle Paul died, she'd offered to help us out with a remodeling project with, I'd thought, a sizable loan. As I sat in Mom's kitchen, though, she explained that it would be a gift, not a loan, "because I don't think you'll be around to enjoy an inheritance from me." As she said this, I saw her eyes get watery and pinkish, and I realized that Mom was under the impression that multiple sclerosis would cause my death at a tragically young age.

I assured Mom that I had every intention of living to a ripe old age, that MS doesn't kill people. I know this because I have read the pamphlets from the MS Society. I also, however, know that this statement, while technically correct, is not quite the whole truth. Fortunately, though, Mom wasn't a big Richard Pryor fan, so I didn't have to tell the whole truth which, I guess, is more or less that people with MS don't live quite as long as the rest of the population.

For the last several years, Mother's Day has been less about paying tribute to Mom and more about meditating on my dysfunctional relationship with her, and thinking about the extent to which that might be my fault. Mom lives about a half hour away from me, but it had been weeks since I last saw her.
technorati tag: multiple sclerosis

Journal: Dizzy

This morning, I'm sitting at my desk and trying to sort out why it is that I'm feeling so odd. My feet seem heavier than usual, and my mind seems foogy and slow. Did I forget to take my morning meds? Did I take my evening pills by mistake? I'm fairly certain I didn't swallow any pills this morning, but I remember very clearly pouring a glass of water for that purpose. I've got some extra Provigil and Lyrica in my desk, but I'd hate to double-dose by mistake. Guh.
technorati tag: multiple sclerosis

Journal: Flunking Lyrica

I checked in with the nice people at the Pain Clinic yesterday. Although I'm taking the maximum dose (600 mg per day), I'd been feeling I was getting much less benefit from the Lyrica than I had initially. This afternoon, I go a call from Steve, a nurse who works with the doc at the Pain Clinic, asking if I wanted to schedule an appointment to come in for an IV infusion of Lidocaine.

The appointment (Steve called it a "trial") lasts four hours. They'll administer small doses of Lidocaine, and will track the effect, if any, that each dose has. The first dose is double blind: neither the patient nor the nurse who administers it knows if it contains Lidocaine or saline. After they're done, they'll send me home (I'll need to arrange for a driver in case I get light-headed) with a pain journal. Based on the pain journal, the doc will decide whether, going forward, I'll need to receive more infusions or whether I should start taking an oral medication called mexilitine, which has an effect identical to that of Lidocaine.

After talking it over with my wife, I made the appointment. The deal is, if I respond to Lidocaine, it might give me only a few hours of benefit, or the effect might last for weeks. Subsequent treatment might be regular infusions (go to the hospital for an hour every week?) or it might mean adding another pill to my daily regimen. I'm thinking to myself, Does it really hurt that bad? What if it interferes with my ability to do my job?

And, most importantly, will it somehow affect our decision whether to buy a shiny new car? We drove a 2006 Civic EX yesterday, and I liked it a lot. It feels like a lot of car for the money: great driving feel, lots of safety features, good gas mileage, pretty nifty to look at, though my wife really disliked the enormous dash created by the big swoopy windshield.

Here's a link to the abstract for the pain doc's study on IV Lidocaine. Snip:

CONCLUSIONS: Lidocaine at 5 mg/kg/h was more effective than placebo at relieving neuropathic pain. The effect started 4 hours after the onset of treatment and continued for at least 4 hours after the end of the infusion. Additional research is needed using higher infusion rates with larger sample sizes to confirm these results and to explore the role of MEGX in the relief of neuropathic pain.

technorati tag: multiple sclerosis

In the news: Brownie, joint, or bong?

Over at Slate, Ryan Grim offers a guide to the best way to take medical marijuana. Snip:

Choosing a marijuana delivery method involves weighing legality, safety and ease of use, and effectiveness. Back in 2004, when I was a staffer at the Marijuana Policy Project, an organization based in Washington, D.C., that works to legalize and regulate marijuana use, I met dozens of patients who used varying methods of marijuana consumption. Since I don't have any medical training, I brushed up on the latest technology by speaking to medical-marijuana patients including Angel Raich, who will be forever remembered by first-year law students as the plaintiff in the Supreme Court case Gonzales v. Raich; Philippe Lucas, president of the Vancouver Island Compassion Society and one of about 1,200 legally registered medical marijuana patients in Canada; and Alison Myrden, another Canadian patient. The reviews of the various delivery methods are based on what they told me about their experiences.

Link.

Journal: Pressure flow studied

Well, I got it over with for another year. Friday afternoon, I donned the gown (which is, when you think about it, a funny term for the "garment" you get at the hospital), laid down on the table, took a very, very deep breath, and tried to keep my nervous wise-cracks to a minimum. This is a picture I took looking down at my pasty white thighs while Jenny (or possibly Jenni) pumped saline into my bladder from the wrong end. You can see the wires snaking across my leg: one from the EKG-type contact tape to my butt and one from the electronic butt plug that Jenny (or possibly Jenni) has gently lodged in my rectum. You can also just make out the tiny tube that connects the catheter to a gizmo that pumps the saline. Jenny (or possibly Jenni) controls the pump with a remote control like the one for your TV.

Each time I've had the hated pressure flow study, I think, I hope I never get to the point where I need to catheterize myself because I just couldn't do it. At the clinic where I've had it done for the last three years, they use a little pediatric-sized cath. Even so, the sensation of that little cath heading northwards up my urethra just takes my breath away. Jenny (or possibly Jenni) remarked that my study looked pretty much like last year's, maybe even a little better.

Afterwards, I took the rest of the afternoon off. I stopped at Whole Foods and bought some nice things: a few bottles of white Bordeaux, some sushi, some blue cheese, and some green olives packed with tasty little strands of seaweed.

technorati tag: multiple sclerosis

Research: Dread and distraction

So I'm sitting here at work this morning, a couple hours before I'm to have the hated pressure flow study, and I'm reading the NYT, and here's a report about a nifty study into how dread--the feeling experienced in anticipation of an unpleasant experience--works in the brain. Snip:

"We sort of knew that things like self-hypnosis help relieve dread, but now we know why," said Dr. Gregory S. Berns, a professor of psychiatry and behavioral sciences at Emory University, who led the study.

The research, being published today in the journal Science, is "terrific, " said a leading expert on brain imaging, Dr. Read Montague, a professor of neuroscience at Baylor College of Medicine who was not involved in the study. It demonstrates that the brain "assigns a cost to waiting for something bad, so that the bad thing is worse when it's delayed farther in the future," Dr. Montague said.
....
The research also sheds light on economic behavior, said George Loewenstein, a behavioral economist at Carnegie Mellon University. According to standard economic models of human behavior, choosing more pain in the short run is irrational, Dr. Loewenstein said: if you know something bad is going to happen, you should postpone it as long as possible, and if something good is going to happen, you should want it right away.

In real life, people often do the exact opposite, he said. They delay gratification to savor a sweet sense of anticipation, and accelerate punishment just to get it over with. The new study sheds light, he said, on how the act of waiting can be used to describe economic behavior more accurately.

Maybe Jenny (or or possibly Jenni) can squeeze me in early...

Link (free reg req'd)

In the news: Drug company data mining

Do you know what your doctor is prescribing for patients other than you? Apparently, drug companies do, according to a piece in today's NYT. Snip:

Although virtually unknown to consumers, the information has long been considered the most potent weapon in pharmaceutical sales -- computerized dossiers showing which physicians are prescribing what drugs. Armed with such data, a drug sales representative can pressure a doctor to write more prescriptions for a name-brand medicine or fewer orders for a competitor's drug.

But now a rebellion is under way by some doctors, who consider the data-gathering an intrusion that feeds overzealous sales practices among the nation's estimated 90,000 drug company representatives. Public officials are also weighing in. A vote on a state bill to clamp down on the practice is scheduled for today in New Hampshire, and similar bills have been introduced in other states, including Arizona and West Virginia.

To appease the doctors and try to stave off the state restrictions, the American Medical Association will soon give individual physicians the choice of declaring their prescription records off limits to drug sales representatives. The new measure is viewed as a self-policing move that the drug industry and the A.M.A., which has lucrative contracts with data-mining companies, hope will keep states from banning sales of prescription data altogether.

Somehow, I'm missing what the AMA's stake is in this practice. Have the docs who belong to the AMA collectively agreed to the collection of this data? Who compiles the data, and how?
Link (free reg req'd).

Journal: On the job

Last night, my friend L who has lymphoma came over for dinner. A few months ago, L came back to town after an absence of a couple years, during which time she'd undergone two autologous stem cell transplants. L picked up her car (which had been rusting in our driveway), signed a lease, went back to her job, and in her spare time, started training for a triathlon that raises money for the Leukemia and Lymphoma society. She looks like a million bucks, and her hair's coming back nicely into an unkempt salt-and-peppery bird's nest.

The triathlon is this weekend. L won't be running, owing to a fracture in her leg, but she'll be donning a wet suit and swimming whatever ridiculous distance it is that triathletes swim. She also managed to get roped into agreeing to deliver some kind of motivational speech to participants the night before the event. Last night, over peach pie, L and my wife and I puzzled over what she should say.

I went to bed sorta early, and I'm not sure whether a speech got written or not. But at one point, L was wondering whether there's any way to explain what it was like to go through her treatment, whether it would be motivational for her to give the excruciating narrative, when she came up with a perfect metaphor for having a serious illness: it's like having a crappy job.

It's like having a crappy job, which you hate, but you continue to show up for work every day, because you don't have any choice, and so you sit in your cubicle under the florescent lights and work, and when you have a moment, maybe you think about how it would be nice if you got a better job, and maybe you even sneak in a little work on your resume, but nobody calls you back, and so you keep on showing up for work, because what else could you do? And maybe every now and then, you think to yourself, Fuck it, I'm just going home to watch TV, you can just fire me, but then your phone rings and it's your boss, or your boss's secretary, and the secretary asks you an incredibly stupid question, and then you're back at it again, working, because what else can you do?

L said she's met people who told her that cancer was the best thing that ever happened to them. I find it hard to believe that somebody who is still sick, who's still stuck in that crappy job, could ever say that.

technorati tag: multiple sclerosis

In the news: Yanks sicker than Brits

A study published in JAMA finds that Americans have higher rates of diabetes, heart disease, strokes, lung disease, and cancer, at all levels of income an education. Snip from NYT:

The study, based on government statistics in both countries, adds context to the already-known fact that the United States spends more on health care than any other industrialized nation, yet trails in rankings of life expectancy.

The United States spends about $5,200 per person on health care while England spends about half that in adjusted dollars.

Even experts familiar with the weaknesses in the U.S. health system seemed stunned by the study's conclusions. ''I knew we were less healthy, but I didn't know the magnitude of the disparities,'' said Gerard Anderson, an expert in chronic disease and international health at Johns Hopkins University who had no role in the research.

''Everybody should be discussing it: Why isn't the richest country in the world the healthiest country in the world?'' asks study co-author Dr. Michael Marmot, an epidemiologist at University College London in England.

Maybe it has something to do with British consumption of mushy peas.

Link (free reg req'd).

Journal: A new specialist for my collection

Yesterday afternoon, I added a new medical specialty to my collection. In addition to a neurologist, 2 urologists, a psychiatrist, a neuropsychologist, and a pain specialist, I now have a gastroenterologist in my scrapbook. (Imagine, if you will, a half-dozen paper-thin, translucent, slightly faded medical professionals, having been dried in a gigantic flower-press and arranged tastefully under the glass of a rather large picture frame. Hee hee.)

I'd not really been looking forward to this visit, thinking it would mean a lengthy discussion of my bowel habits (or lack thereof). After all, over the past three months, I'd already had to do that a half-dozen times with three different primary care docs (Dr. A retired at the end of 2005, Dr. B took maternity leave in February, leaving Dr. C to hold down the fort). All three had, more or less, counseled "Fiber, fiber, and more fiber" in addition to judicious use of stool softeners and a mild laxative (the hated Milk of Magnesia). And drink more water, idiot.

It wasn't really working for me. What was working for me was a nifty little product called Glycolax. A friend of mine, who'd had lymphoma, had hooked me up with a bottle of the stuff, in violation of state and federal law. She did so, though, only after consulting with an M.D. friend of hers, who opined that it seemed unlikely to do me any harm. Glycolax is a powdery form of polyethylene glycol; you mix a capful up with 8 oz. of water and stir until it dissolves, and drink. It's completely flavorless (it's like drinking water that's just a bit less watery) and isn't absorbed by the body. The Glycolax apparently refuses to allow your small bowel to suck the water out of it, and you end up getting a healthy dose of moisture delivered to your colon, free of calories, gas, or yucky Metamucil.

So when my primary doc finally referred me to a GI doc, I started rehearsing my bowel history routine, trying to remember what had happened, what I'd tried, in what sequence, what other factors might be relevant, and so forth. In the end, though, the visit to the GI doc took about 10 minutes: I delivered the executive summary of my gut troubles, and he wrote me a script for Glycolax (and more detailed instructions for the "Fiber, fiber, fiber" component).

Said the GI doc, "Glycolax is essentially an oral enema. If it works for you, keep taking it, regularly." (I'm guessing the "oral enema" angle isn't something the manufacturer touts, at least not to patients). The GI doc also said "Fiber, fiber, fiber" (wheat bran, specifically), but with the very helpful proviso that I should add it to my diet gradually. If you give a constipated person fiber, it's not going to help unconstipate him, and will tend to sit in the colon where gut florae will magically convert the fiber into fart. Aha.

So, relatively painless. Which is a great blessing, for this Friday, I undergo my annual pressure flow study at the urology clinic. That will not be painless. If you haven't had a pressure flow study, it's a process where the patient is catheterized and connected to a computer and certain muscle sensors, including one that is essentially an electronic butt plug. The nurse, who is named Jenny (or possibly Jenni) then begins to fill your bladder from the wrong end, forcing saline solution into into it until you piss yourself. The computer then charts a bunch of colored lines on the monitor that tell your urologist important things about how your plumbing is malfunctioning. Then you thank Jenny (or possibly Jenni), complimenting her on her ability to preserve whatever fraction of your dignity remains at the end of the procedure. Seriously, though, she's great.

technorati tag: multiple sclerosis