Yuk: working on a weekend

It's a gorgeous day outside and people are absolutely mobbing the farmer's market, so parking is a hassle. But I don't get to browse the produce and people-watch, because I am here to work. It's crunch time at the office, and I've got some serious work to do. Which I am not currently doing, seeing as how I'm blogging about how much I resent being here. Which means I will be here that much longer.

I'm a little sleepy, a little dopey, and my thighs are burning up after an hour and a half in my desk chair. Maybe it's worse because it's Saturday, or maybe it's because I'm wearing shorts and the upholstery of the chair is right up against my skin. It helps that on a Saturday in the office the radio is just a little bit louder and the clothes just a little more comfy. Still, this is the kind of thing I worry about: sure, I can keep up on a regular workday, and at the end of the day, especially on Friday, I'm thoroughly whupped and cranky and ready for a bit of R & R over the weekend, but can I still keep up with the workload when I have to get up on Saturday and drag my sorry ass to work? Fortunately, this probably won't happen next weekend or the weekend after that. But it does make me think.

OK, back to work.

Especially for Stephen: More about my urethra

Well, like most of my run-ins with the medical establishment, getting Botox injected into my sphincter wasn't as bad as I feared. It will be a couple weeks before I'll be able to tell if it helps.

A few hours before I was due to have the procedure, I was still waiting to hear back from the HMO about whether they'd cover it or not. I'd called them as soon as I scheduled the procedure, but played phone tag for a few days until yesterday, when I finally got hold of the woman who is apparently my "case worker." At first, she said they would not pay, because as of their most recent review of the literature (last March) the procedure was still considered experimental. So I figured I'd have to call off the procedure and wind my way through the appeals process, and I told her so. She told me she would double check with Dr. So-and-so, and would call me back.

As soon as I hung up, I dialed the urology clinic to ask if they could give me any ammunition to support the necessity of the procedure, but the PA I talked to acknowldged that they knew some insurers--particularly Medicaid--took this position and there wasn't anything definitive in the literature. At this point, I was also cruising PubMed for anything recent on the topic, but without real success: just a review published a little less than a year ago, with an abstract that didn't really say anything.

At that point, my case worker from the HMO called back and told me to go ahead, keep the appointment, and they would pay for it. She didn't exactly say why, but she said she'd be contacting my urologist so that they could get more current information about the procedure. She offered a nice apology--We're sorry, we promise we'll do better next time--and called me "Kiddo." I imagine this woman probably feels like she knows me pretty well, knows all about my MS, who I'm seeing and what drugs I''m taking, and why.

So the procedure took about a half hour. Strip nekkid, get on the table, put your legs in the stirrups, and wait for the docs while the nurse sponges iodine all over your bits. Then, a little bit of lidocaine in the pee-pee, you might feel a little chill, then a clamp is gently attached to the family jewels, and you stare up at the ceiling while you wait for the doctor to show up.

Twenty minutes later, here comes Dr. A with Dr. B in tow. Dr. B is a resident and he'll be doing the procedure. Between my elevated knees, I see young Dr. B fiddling with the thing that will be shoved down my urethra like a sharp stick through an Oscar Myer wiener at a cook-out. At this point, my pulse escalates from the already elevated dumpadumpadumpa to hummingbird-speed wheedleeedleeedle, and I blurt out, "Oh, that's just great," and immediately regret it. Dr. B is unfazed and tells me he's inserted catheters maybe 600 times and I won't feel a thing.

And God bless him, Dr. B is right; I didn't feel a thing. Dr. A points at the monitor and shows me what the inside of my urethra looks like: it looks like the inside of a water slide, except it is a sort of blotchy pink and there are no screaming half-naked children whooshing through. When, a few seconds later, we get to the sphincter, I shut my eyes.

Dr. A is now addressing Dr. B, telling him where ("there, right at twelve o'clock") to do the injection, and a couple seconds later, I feel a jab somewhere where I have never been jabbed before, and I jump a couple inches off the table. It's dulled by the lidocaine, though, so it's like when the dentist puts the giant needle of novacaine deep into your skull. They do this a couple more times, then suddenly I feel a trickle of something run down my bottom, and the catheter's out, and the doctors are out the door. Somebody brings me a few towels, and then I'm left alone to wipe off the iodine, dress, and go home. I eat a big piece of carrot cake in the car while my wife drives me home through rush hour traffic.

Yes, afterward it hurt when I peed, hurts a little less today. Last night, I remember that somebody said something about getting a dose of Cipro to make sure I don't get an infection, but somehow I left without it. All in all, sorta unpleasant (like going to the dentist, except you're wearing no pants and everybody's attention is fixed on your crotch), but less unpleasant than the hated pressure flow study (smaller catheter but no anaesthetic, plus the butt-plug and electrodes).

If it works (how do I know if it's working?), I'd do it again.

Bad idea

Going on a fishing trip off the coast of Iran is like going deer hunting in the DMZ between the Koreas.

Big day?

Today, I get my Botox injection. Maybe. I'm still waiting for my HMO's Care Management Department to tell me whether they'll pay for it. I guess anything involving Botox gets extra-careful attention. Because, you know, it might not really be about improving my bladder function, it might just be costmetic. Because, I don't know, I have a wrinkly urethra?

Botox on tap

I called my urologist and scheduled the Botox procedure for next week. As it turns out, I won't be getting it in the bladder detrusor, but in the, uh, pee schincter (just now, I can't remember what you call that gizmo). The immobilization of the bladder detrusor is for those who are self-catheterizing, because you can't pee without the detrusor. I'll be getting the sphincter muscle immobilized, which won't do anything to stop the detrusor spasms that send me running for the potty. What it will do is stop my pee sphincter from closing up when I try to get my detrusor to contract, permitting me to empty properly.

I need to get clearance from the HMO, but the urology department reports they haven't had any trouble getting my HMO to pay.

What's really in my fridge?

I like to cook, and like a lot of foodies I know, my fridge and freezer are littered with little bits of the miscellaneous ingredients that make for interesting food creations and experiments. In the freezer, there are little bags of assorted nuts in various shapes: filberts, pecans, walnuts, almonds (sliced, slivered, whole, raw, roasted and salted). There's a bag full of fist-sized lumps of homemade chorizo, a smallish baggie of keffir lime leaves (essential to a good Thai-style curry), bread yeast, some beef short ribs for soup. The door of the fridge contains the usual assortment of condiments: mustards, jellies, pickle relish, homemade maple syrup, olives, pickles, Worcestershire sauce, curry pastes.

The fridge door also contains a dozen bottles of assorted Asian staples, all of them picked up at one of our local Asian groceries. I love wandering around these stores and sifting through the endless varieties of sauces, noodles, teas, fungi, and what-have-you. I don't really buy the exotic stuff, but I do keep on hand some of the basics: Thai fish sauce, a couple kinds of soy sauce, oyster sauce, hoisin sauce, chili sauce, black bean paste. All of this is imported. I haven't really paid attention to where it comes from.

This morning, I laid in bed listening to a story about the growth of foods imported from China and the questions about the safety of some of that food. It's not just pet food, of course, it's people-food, too, and it's not always possible to tell when you're consuming imported food. This is because in addition to finished products, China exports a lot of ingredients used to make the stuff we buy. FDA inspects only a tiny fraction of the foods we import. Without going into detail, it was a little spooky.

So I'm thinking about placing more importance on buying food from closer to home, even though it might cost a bit more. I can't give up oyster sauce or curry paste, but there has to be a domestic source for the stuff. That might not guarantee the safety of the product, but maybe it improves my odds.

Link to NPR story.

Michael Moore's new movie

So Michael Moore's new movie Sicko is being favorably received in Cannes. Sicko is about how bad the American health care system sucks and why it is that we seem to like it that way. Snip from the LAT:

"I don't have to convince the American public that there is something wrong with our health care system. I think most American people already feel that way," said Moore, who enjoys great coverage himself through the Directors Guild of America. "That's why I don't spend a lot of time in the film on the healthcare horror stories. I wanted to propose that there's a different way we can go with this. I'm hoping that the American people, when they see this film, will say, 'You know, there is a better way, and maybe we should look at what they are doing in some of these other countries..."

Link.
I appreciate Moore's viewpoint, but not his confrontational approach. I didn't see Fahrenheit 911, not because I think the present war is good public policy, but because I think instead of starting a conversation at the political center, the movie just added to the shouting match already in progress between the people at the fringes. So when I heard that Moore was making a movie about an issue that affects me deeply in a very personal way (which is not to suggest that I consider terrorism/war/foreign policy/everything else to be a garnish on the garnish of our great political ham), I was nervous, even though I'm all for single-payer and figure he is, too.

The LAT reports, however, that Moore has, in Sicko, forgone some of the confrontational episodes that marked his other films. Snip:

"When people say there is no confrontation in this movie, to me there is a big confrontation in this movie," Moore said in an interview here. "Because I am confronting the American audience with a question: 'Who are we, and what has happened to our soul?' To me, that's maybe more confrontation than going after the CEO of Aetna or the CEO of Pfizer." The reason Moore feels compelled to ask this "Sicko" question is because, he feels, the country unthinkingly settles for substandard and ruinously expensive medical treatment, especially when compared with countries with universal healthcare.

I'm looking forward to seeing Sicko, but mostly, I'm looking forward to an invigorated popular conversation about the issue. Hold the chest-poking, though, please.

3d ventricle?

These are coronal views from MRI head-shots last fall. I think the third ventricle is the little opening indicated by the red circle. Hard to believe you could tell much about the size of the little guy from a sonograph, but I'm not a professional. I've also got some MRI films from way back (1993?); I wonder how they'd compare.

Thinking about grandpa and physical therapy

One of the MS-related abstracts last week was something about multiple sclerosis and Guillan-Barre Syndrome. I don't remember anything about the abstract, but it got me to thinking about my late grandpa, who had GBS and died when I was a freshman in college.

He was an interesting guy, from the little I know of him. He was born in Sweden and, along with a friend, ran away to sea as a kid, in part to escape a troubled family life (troubled like Dickensian troubled, I guess). Eventually, he became a ship's captain of, among other vessels, liberty ships during WWII. On day, maybe in his fifties, he woke up while he was at sea and couldn't move. That was the end of his working life.

As a kid, I knew him as a frail-looking old guy who shuffled around a big old house in old-guy Hush Puppies and spoke heavily-accented English, which made him hard to understand. I can remember picking up the phone as an adolescent and being so unable to understand him that I thought it was a crank call. He had a passion for gadgets, mainly photographic or electronic, and liked James Galway and Miller High Life. He didn't smile or laugh much, except occasionally at the dog, an Airedale named Bingley (there were a few different dogs who played the role of Bingley). I think he was probably an alcoholic at some level.

He had about a gazillion photos he had taken during his life at sea, of places he had been and ships he had sailed. I have a copy of his picture of the Steel Maker in my office. There were plenty of pictures of him, too: a trim but muscular, stern-looking guy in a uniform, who looked like someone not to be fucked with. I remember him talking about the time he had a lion or tiger or something like that on the ship in a cage as cargo, and the lion or tiger got out of the cage and jumped overboard in the middle of the ocean.

If he was still around, I'd like to think that I would have some kind of insight into who he was, how his life had been changed by his illness, what it meant to go from sailing around the word to tending to the geraniums hanging on the porch.

I got a little taste of that feeling at my last physical therapy appointment. The thing about physical therapy is that the exercises prescribed for you will do one or both of the following: 1) make you intensely fatigued, because the whole point of PT is to find those motions that are most difficult for you, and 2) make you feel like a big sissy, because you know that the exercise you are supposed to do is something that most people do every day, maybe all day long, and think nothing of it.

Actually, PT is going pretty well. I think my therapist is very smart and conscientious, and she has been very adept at zeroing in on my weaknesses and modifying exercises if necessary. The problem is finding the stamina to do my exercises and all the other things I must do or enjoy doing. During the work week, do I do them in the morning before work, such that I arrive at the office already pooped out, or do I try to do them after work, when I've already burned most of my energy for the day and would really prefer to just veg out in front of the TV? The answer is, I do the exercises when I can, in the morning with a cup of coffee, during the work day while sitting at my desk, and I do them in the evening while watching the cast of Grey's Anatomy struggle with their screwed-up lives. I don't do them as often as I should, but I do what I have time/energy for, and I think about what it will be like in the future, when and if it becomes my full-time job to try and take care of myself and possibly the geraniums hanging on the porch.

Neuropsychological impairment and the 3rd ventricle

In today's batch of MS-related abstracts from PubMed (which, by the way, you can get as an RSS feed, which I do) reports that the width of the brain's third ventricle, as measured by transcranial brain sonography, has a "good correlation" to cognitive impairment in MS patients. Here's a link to the abstract.

I've never had a transcranial brain sonograph, but I've got some relatively recent (6-9 months old) MRI images. I wonder what my third ventricle looks like- maybe I'll try to post a picture that shows my third ventricle. Unfortunately, the abstract doesn't really say whether it's larger-than-normal or smaller-than-normal ventricular width that correlates to cognitive impairment, so I'll probably just end up torturing myself unnecessarily, but hey, that's what science is all about, right?

Dazed and bemused

This morning, I was so pleased to have remembered my 9:00 am PT appointment and to have actually made it there on time, notwithstanding crappy traffic, that I stopped at Whole Paycheck and picked up a box of spicy tuna rolls. A couple hours later, though, I started feeling unusually sleepy and realized I'd skipped my morning meds: Provigil and Cymbalta. Drat. Too late to take the Provigil, I think, and no Cymbalta in my desk-drawer minipharmacy.

I really, really like the Provigil, and when I forget it, I remember how dopey, listless, and bummed I felt without it. The cash price for 200 mg Provigil tabs at Walgreens is $9 and change. So help me God, if I lose my insurance for some reason, I will take to sticking up liquor stores if I have to so I can get my fix.

Three awful weather words for May

"Near record highs."

More good news on Botox for bladder issues

New research shows Botox injections in the bladder detrusor remain effective after multiple injections. My urologist has mentioned this as an option a couple of times, and I'm thinking that I might give it a go some time in the not-so-distant future. My pee-pee problems are still pretty manageable, but I have noticed that things got a little worse over the last year or so. I'd say there's been a 25% decrease in the time between "I gotta go" and "I seem to be going." According to the study, participants receiving Botox got a mean maximal cystometric capacity increase of 144 ml. That's about half a beer, right?

Link to abstract.

Another go at physical therapy

I went back to the HMO physical therapy clinic on Wednesday afternoon, having been told that the HMO would not pay for a second visit to the University Hospital's PT clinic to complete an evaluation. The HMO's PT clinic is, of course, all the way on the other side of town from where we live, so it takes 30-45 minutes to get there, depending on traffic. It's at the edge of the sprawltastic land of shopping malls and big, big box retail, and it's a part of town that I just don't have any reason to go to.

I'd asked to see the therapist who had the most expertise with neurological rehab, but one of the first things out of J. the therapist's mouth was that next time, I'd be seeing a different PT, one who has more neuro experience, and, in fact, used to work at the University Hospital's PT clinic. Right off the bat, J. seemed to be aware that I'd seen someone at the University Hospital PT clinic, and that I'd wanted to go back. J. had read the notes from my visit to the other clinic, and said a few times that they hoped I'd give the HMO clinic a shot, but that if I thought after a few visits that I wasn't getting what I needed, they'd support my request to go back to the University Hopital's PT clinic. That seemed reasonable to me.

So we did some basic strength and balance testing. As at the U's clinic, J. decided I had some definite weaknesses in my legs: dorsiflexion of the feet, esp. on the left; hip abduction on both sides; and whatever you call it when, from a seated position, you rotate your leg and bring your left foot up towards your right knee. We also did some balance stuff, which was okay with my eyes open, but went to crap once I had to close my eyes.

I left the office after 45 minutes with three more appointments set up with V., the other therapist; a printout with some exercises to work on strength and balance; and a realization that things had gotten decidedly worse for me, strength and balance-wise, since my last visit to PT. I also got a free pass to the huge gym complex at the building where the HMO PT clinic is located. It's on the wrong side of town, but it has this neat donut-shaped pool with a strong current in it, and when I last went to PT, I really enjoyed bobbing up and down and walking around and around against the current. I'm thinking about dashing out there this afternoon.

Rituxan looks good in Phase II

Just read a Reuters story reporting on promising results of a Stage II clinical trial of Rituxan, a drug developed for treating lymphoma:

The number of lesions at weeks 12, 16, 20 and 24 was statistically far lower in the Rituxan group. At week 24, the total number of lesions was reduced by 91 percent -- to an average of 0.5 per patient in the Rituxan-treated group, compared with 5.5 lesions in the placebo arm of the trial.

"In addition, the proportion of patients with relapses over 24 weeks in the Rituxan-treated arm was 14.5 percent compared to 34.3 percent in the placebo arm," representing a 58 percent relative decrease, the drugmakers [Genentech and Biogen] said in a joint release.

Link.

More data on Tysabri: MRI outcomes

New data indicate that Tysabri reduces both quantity and volume of lesions showing up on MRI examination, as compared to placebo. Here's a link to the abstract.

I wonder how that compares to the CRABs.

A craptacular weekend

TGIM. The weekend began nicely enough. Friday was beautiful, and I took the day off. My in-laws had come to town to help us with the demolition of our old, rotten 3-season porch. I had promised myself not to pick up a crowbar, but intended to see that those wielding crowbars were properly fed, etc.

The dumpster arrived late Friday morning, and God bless 'em, my sixtyish in-laws went right out and started taking out the window, pulling off the siding, and so forth. I made lunch, did the dishes, and looked after the dogs, and that was fine.

On Saturday, we'd asked a couple friends to come over to help, but before they arrived, my wife and her dad were out wrestling with the deck. It was sunny and warm, and I thought I'd go out and help for a bit before the heat of midday. Bad idea: after 20 minutes trying to convince some decking screws to come out, I was bushed and barely able to stand or walk. That pretty much set the tone for the rest of the weekend, which I spent wobbling around trying to get a few things off my to-do list, at the same time being frustrated that everyone but me was steadily moving the old porch and deck from the back yard to the dumpster in the driveway. Even my mother-in-law was outside swinging a sledgehammer around.

The culmination of my weekend was my unsuccessful effort to get out in the boat on Sunday to do some fishing and sulking. I spent a half hour at the landing trying to get the motor running, then had to get the boat back on the trailer. Later efforts at home to get the thing started also failed, leaving me feeling like I had burned up an entire sunny spring 3-day weekend without managing to accomplish either work or recreation. I am now relieved to be in my office at my computer, at least getting a bit of blogging done.

My in-laws are just about the nicest people on Earth, but I can't help but wonder what they think of their increasingly disabled son-in-law. While they were no doubt pleased to see their son-in-law graduate from law school and find gainful employment, I imagine they must worry about what the future holds for him, and for their daughter, who must increasingly take on the role of caregiver.

Study: More GA is better

A recent study found that doubling the dose of Copaxone resulted in a 38% drop in enhancing lesions when compared to the current 20 mg standard dose, though injection-site reactions were worse. Take two, they're small.

Link

Study: Tysabri reduces MS vision loss

Forbes.com reports that a new study finds Tysabri (which the report describes as "controversial") reduces vision loss by almost half. Snip:

"Vision loss is probably one of the most disabling things that happens to people with MS," said lead researcher Dr. Laura J. Balcer, an associate professor of neurology at the University of Pennsylvania School of Medicine. "The exciting thing is, first, that we now have an eye-chart test that can pick that up and can show if treatments help vision. Second, this particular drug appears to help prevent vision loss."

I haven't had much noticeable vision trouble, though I remember several years ago I had a bit of vision loss in my right eye when I got overheated. Seems like it mostly resolved after a month or so.
Link.

Managing managed care: PT

I've been covered by a local HMO for the past 4 1/2 years, and for the most part, I'm a satisfied customer. I've have been disappointed, though, with the HMO's physical therapy services. Since 1999 or so, I've encountered PT three times.

The first time, I went on the recommendation of my neurologist. This was shortly before I started to feel like MS had significantly affected my life. I went in for an evaluation, and got a workup that took a couple of hours to evaluate strength and balance, including a spin on a computerized gizmo that evaluated my balance. They prescribed some exercises for me, which I nibbled at for a few weeks and then forgot entirely.

The second time was with a PT who works for my current HMO. The PT, who has a Ph. D. and who I'm pretty sure is the head of their clinical PT department, spent maybe a half hour evaluating muscle strength and tone in my legs, then prescribed some exercises, including some stuff I could do in the pool that is conveniently located in the same building as the PT office. After the initial visit, I came back maybe a dozen times. In the subsequent visits, the PT would spend 15-20 minutes chatting with me while he did some things to stretch out my hamstrings, and then I'd go down to the pool and work out there for another 20-30 minutes. After a dozen visits or so, the HMO told me they wouldn't cover additional visits because they had determined I was only getting "maintenance therapy" (i.e., therapy that was intended to prevent further disability), which they don't cover. So I stopped going, and didn't think much about it.

Then, maybe a year and a half ago, both my MS neurologist and my pain clinic neurologist, started to talk during my visits about how I might benefit from additional PT. I told them that I'd had some PT from my HMO, but that I didn't think I'd gotten much out of it. Both of them suggested that I try to get my HMO to cover an evaluation with a PT affiliated with the local university hospital. They said they'd had some good experiences with patient getting PT from the university hospital folks, so I contacted my primary care doc, who said it seemed like a good idea, and put in a request for a referral.

The "care management" department at the HMO, though, refused to allow me to go to an outside PT, because they said they'd talked to the in-house PT folks, who said they they thought they would be able to provide appropriate care. So I told my pain clinic neurologist this, and he said, Well, you're entitled to get a second opinion on the program you got from the HMO PT, so we'll get you in to the university hospital PT clinic for a second opinion. After initially denying a visit to the university PT clinic, the HMO approved one visit for a second opinion.

Three weeks ago, I went to the university PT clinic. They spent an hour doing a careful evaluation of muscle strength and tone, and did some initial evaluation of my balance. Based on that initial evaluation, the university PT said she'd like me to come back for another visit to put me on the computerized balance-testing gizmo. She knew I'd only been approved for one visit, though, so she said she would contact my HMO, explain the situation, and obtain authorization to complete her evaluation.

A week ago, the university clinic PT called to say she'd spoken to the nurse who works in my HMO's care management department, but that the nurse had refused to authorize another visit. The PT explained that she thought the care management nurse had been unusually negative about a second visit, but suggested that I talk to my primary care doc.

So I called the primary care doc's nurse, explained the situation, and asked to have my doc call me back. My primary care doc called back the next day. She said she'd looked at the initial information from the university clinic PT, and gushed about how the PT had written an "awesome" 6-page note detailing her findings thus far and her intentions for further evaluation. My primary care doc told me she thought it made a lot of sense to send me back to the university clinic PT to finish what she'd started, especially because she was so impressed with her work so far.

Yesterday, my wife had an appointment with her primary care doc, who happens also to be my primary care doc. Our primary care doc reported that her request to send me back to the university PT had been denied, and that she was somewhat surprised by this decision.

So today, I'm trying to figure out what to do next. On one hand, I'm pretty sure I have the right to appeal the decision to deny additional visits, and I know that my two neurologists and my primary care doc would all support going back to complete the university clinic PT's evaluation. On the other hand, though, I'm pretty sure I'm only legally entitled to go outside the HMO for care if the HMO is unable to provide care that is medically appropriate, and the HMO seems pretty sure its PTs are just fine.

The way I see it, I have a few options. First, I could step up to the plate and challenge the denial, mustering whatever arguments I can come up with, and generally being a squeaky wheel. Second, I could go back to the HMO's PTs for a fresh evaluation and exercise program, and then ask for a second second opinion, which would permit me to go back to the university clinic folks one more visit and hopefully finish what we started. Or third, I could bide my time until this fall, when I'd have the opportunity to switch to an HMO that uses the services of the university clinic PTs.

The first option sounds like it could require a lot of energy--phone calls, letters, parsing the insurance contract--with an uncertain chance of success. The second option is probably the path of least resistance, though it galls me to let the care management nurse's opinion supersede the medical judgment of my posse of physicians. And the third option means a long wait, untold administrative hassles, and leaving behind a primary care doc that both my wife and I like a lot.

Any suggestions?