One mystery solved

Last Wednesday, I started feeling really crappy: achy, tired, and a little dizzy. It was a familiar feeling. I'd last felt it the day a few years ago when I'd mistakenly taken my bedtime pills in the morning. This time, though, I was certain that I'd taken my AM pills (after the last med mix-up, I bought a pill case of an entirely different color and design for my AM pills). The only thing I could think of was that I had probably missed a couple days of amitriptyline after forgetting to pick it up at Walgreen's.

Well, Friday morning, I figured it out: yes, I had correctly taken the pills from the AM pill case, but I had mistakenly portioned out the elongated, white nefazodone tablets, instead of the elongated, white Provigil tablets. So I wasn't getting the Provigil boost, and was instead giving myself more than double the correct dose of nefazodone and getting most of it in the morning. So I sorted out the right pills, and started feeling better almost immediately, although I woke up with really sore hips on Saturday.

It sure would be helpful if the makers of ordinary-looking white pills would give them some kind of obvious distinguishing mark, like a wacky shape or some kind of color. Flomax is good: orange/green capsule; Cymbalta is good, too: blue/green capsule. But Provigil kinda looks like nefazodone, which kinda looks like Tylenol. Baclofen and amitriptyline are both ordinary-looking round pills. I guess I can understand why the generics might forgo fancy shapes and colors, but Provigil? That stuff is expensive. My HMO pays good money for the stuff. You'd think a Schedule IV drug would have some flashy color or something. Oh well.

By the by, you've probably seen the articles about the discovery of three genes that are linked to MS. See the WaPo article here. According to the Post, these findings give you and me "new hope." I think that's hyperbole, of course, because this kind of study seems more to suggest how much we don't know about MS. After all, the Post article quotes one of the investigators as saying, "We suspect there will be dozens, perhaps hundreds of gene variations associated with MS."

Speaking of new hope, I have officially concluded that I received no benefit from the Botox procedure. No change in urgency, emptying, bedwetting, dribbling, or any of the bladder-related indignities. Too bad. On the other hand, I got to see what the inside of my urethra looks like, so it's not a total loss.

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.

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.

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.