Wednesday, April 25, 2007

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.

Monday, April 23, 2007

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.

Tuesday, April 17, 2007

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.


Study: Tysabri reduces MS vision loss 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.

Wednesday, April 11, 2007

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?

Thursday, April 05, 2007

Could pot ease MS progress, not just symptoms?

If a couple of stories on PR services are correct, the new issue of Nature Medicine will report that researchers believe that cannabis could protect against nerve damage, thereby slowing the progression of disability. Snip:
Cannabis works because it stimulates molecules known as cannabinoid receptors within the body. The group had previously reported that THC could alleviate disease symptoms, and also save nerves from the damaging effects of the disease - thus potentially, via the cannabinoid receptor CB1, slowing down the development of progressive disability. They had not previously examined the influence of cannabinoids on immune aspects of the disease.

Now their most recent study has successfully separated the roles of cannabinoid receptors CB1 and CB2 on neurons and T cells, and investigated their effect in controlling central nervous system autoimmunity. It showed that CB1 receptor expression by nerves in the brain, but not T cells, could suppress the development of an experimental MS-like disease, by stimulating the release of anti-inflammatory molecules, whilst in contrast direct stimulation of CB2 receptors by T cells was also able to control inflammation associated with the condition. This suggests that cannabis-like drugs may have the potential to block the autoimmune response which drives disease development.

The researchers also say that it might be possible to get the neuroprotective benefit from THC without the high associated with stimulating the CB1 receptors. Dang.

St. Joan's relics fail smell test

An item at the journal Nature's website tells how professional perfume-sniffers helped researchers prove that alleged bits of the burnt saint were actually bits of an Egyptian mummy. Snip:
The researchers used a battery of techniques to investigate the remains, including mass, infrared and atomic-emission spectrometry, electron microscopy, pollen analysis and, unusually, the help of the leading 'noses' of the perfume industry: Sylvaine Delacourte from Guerlain, and Jean-Michel Duriez from Jean Patou.

Odour analysis is a new technique for palaeopathology, but Charlier says that he hit on the idea after being struck by the variety of odours of other historical corpses. Delacourte and Duriez sniffed the relics and nine other samples of bone and hair from Charlier's lab without being told what the samples were. They were also not allowed to confer. Both smelled hints of 'burnt plaster' and 'vanilla' in the samples from the relics.

The plaster smell was consistent with the fact that Joan of Arc was burnt on a plaster stake, not a wooden one, to make the whole macabre spectacle last longer. But vanilla is inconsistent with cremation. "Vanillin is produced during decomposition of a body," says Charlier. "You would find it in a mummy, but not in someone who was burnt."