Thursday, April 9, 2009

Ain't it just like the present, to keep showing up like this.....

I had no idea that the Montel/Oprah show was going to be such a flash point for people. Honestly I think it might shed some light on something for us: far too many of us watch far too much television or that far too many of us put far too much faith in the old boob tube. Whatever the case, I’m glad that there were such strong feelings about it. I never would have guessed that the show would actually help increased the readership for the good ‘ol blog here. Although, I suppose that is the end goal. Spread the name of Bald Ben as far and wide as we can, then on to world domination. Honestly, the attention was all very nice, it was great to see you all, and I hope you enjoyed the rantings and ravings of a mad bald guy. Normally I just tend to scare people away. My mouth often has that effect. Nevertheless, the last post showed up over at Carnival of Bloggers (thanks Lisa/linked on the right) and even garnered me a lovely award (see below).





This lovely piece of blogger ephemera has been sent to me by Tracy Ramblings, a really fantastic bloggers I like to count as a friend (albeit cyber-friend, but whatever, I would jump in front of a cyber bus for her. I bet she would do the same for me.) Tracy writes over at “Living Life With Sarcasm, Kids, and MS" (linked on the right). She’s a great writer, has a lot of well pointed insight and if you’re not familiar you should be. Stop wasting your time here and go over there. ......Well, hold on, let’s not be so hasty. Relax, here’s some tickets to the buffet. I have a few more things to say and then feel free to mingle.

Anyway, if you have seen Tracy’s blog, or her comments left here, you will recognize that I am actually removing the “S” tacked on her profile name that signifies ownership of said ramblings. As in these are thoughts or musings of Tracy. Well, I say grammar be damned. (I am sure my disdain for grammar is evident from my writing, but I digress) I like to remove the S thereby giving Tracy a first and a last name, some sort of persona, a persona born of the spirit of so many purveyors of punk rock and independent musicians that have informed my life. i.e. Joey Ramone, Johnny Rotten, Lux Interior, etc.

Tracy’s last name of course is not Ramblings, however it is here. Tracy Ramblings may be someone I never meet in real life, and this is just an attempt at personalizing the dots and blips that stream from my computer screen. It’s human nature, I suppose, my nature at the very least. I like nick names, after all. I am “Bald” Ben, I dubbed one of my college roommates “Tex” after I made the very astute observation that he was from the state of Texas, I will often refer to my children as “Bongo“ and “The Fonz”, and I even call my wife “Honey”. See, nicknames.
Whatever the case Tracy Ramblings is who you are going to be here, I hope you don’t mind. Anyway, thanks for the award. It is much appreciated. I think I have a medal or a cookie around here for you somewhere. Although, I think the medal is bent and the cookie is probably stale. I’ll keep working on it.

On to the issues at hand today. Yeah, we are going to have to move on from Montel, lovelty awards, and even cow tipping and actually talk about MS. There are a few new realities a’knocking on the hairless dome, and I not only need to get them off my chest, I also am interested in any thoughts out there.

First: stomach problems.

Are you serious? Stomach who the hell asked you to join this party? I’ve got plenty of guests already and you can kindly show yourself to the door. Oh, you already found the bar. Great.

The thing is I’ve been getting some crazy pains in the region of the belly for the last few weeks, and it just doesn’t seem like the sorta thing I should ignore. A guy gets hungry from time to time, you know, and often the body will send "pangs" to notify you of the impending digestion of ones own stomach, however while getting these nice reminders to eat one day I began to get a much more sever pain. Sorta like the little fish getting devoured by the big fish. Then that big fish swam into the hours of my slumber and decided that sleeping was not a needed function. As of late big fish just sorta wades around whenever he feels like it. I think he might be a barricuda.

Figured it was time to go see the old GP. Before we get into all that though, allow me to beat you to the bunch: No, I do not have to go to the bathroom. Common question when you have stomach pains I have found. No, the pipes seem to be working fine. The truth is I’m 144lbs soaking wet, the last thing I need is something stopping me from wanting to eat. It could be dangerous.

So I went and saw my GP. He’s a bit strange, honestly, but seems to be a good doctor, just a bit off (It’s okay to say he is strange because remember, it takes one to know one.) After a few minutes of pushing on my stomach and a long conversation about when it is a good time to learn a foreign language, he seems convinced that I have a stomach ulcer. I’m not entirely sure if learning Italian in my late teens had anything to do with the diagnosis, but at any rate if you direct your attention to the right you will notice a new addition to the medication chart: Prilosec. It seems to be calming things down a bit, I’ve been able to sleep and whatnot, but it is only a temporary fix. GP has also referred me to a Gastro-intestinal guy.

The strange GP gave me a practice to contact and I was on my way to the nearest internet connection to take a look. As I have stated previously the internet is a wonderful place. One is able to locate just about anything one hopes to discover. Have a theory? I’ll bet there is some evidence to back it up somewhere out here on this inter-web. Take a look: Hollow Earth(http://www.ourhollowearth.com/), Cuban Alien Conspiracy (http://weeklyworldnews.com/alien-alert/7419/fidel-castro-meets-the-alien/), or this (http://www.flickr.com/photos/tlong/2306499278/).

Anyway the information I uncovered about the recommended practice was no where near as life altering but it was all the info I needed. As soon as I saw the founding doctors name was Guttman I was sold. It was so perfect and ridiculous that I knew I was home. I made my appointment, but to my dismay Dr. Guttman was all booked up. Which then led me to wonder if he really exists or is just some sorta of mascot like the pilsbarry doughboy or something. I begrudgingly scheduled with another in the practice and went on my way.

Now, like many of you, I have seen my fair share of doctors. I don’t trust ‘em, like many people don’t trust lawyers. So I always go in with my fair share of dubiousness and try to do my best to get through the doctor speak. Nevertheless, this guy seemed alright and was surprisingly interested in my problem, leaving me to question if perhaps I am just jaded from a few bad experiences. (Me jaded?) Anyway, we spoke at great length about the current symptoms, MS, and even into very old swallowing problems that have persisted through out much of my life. It was actually kind of refreshing. I felt like I might be getting somewhere.

He agreed that I might have an ulcer, but he felt that there might be some other forces at work as well. He kept referencing a condition that he said has only recently begun to be diagnosed. Leave it to me to break medical ground. Woohoo, Ben…. And as medical words go the name of this condition is a bit of a doozie; lots and lots of syllables. Enough syllables that, despite his incessant recitation of its name, it went in one side of my bald head and out the other. The doctor said this word so often that I began to believe that he was on some sort of retainer from the disease. Perhaps he was getting a kick back every time he uttered the word. Wish I could get a kick back every time I swallowed. Having diseases and conditions just doesn’t pay. Whatever the case, I did garner a story about a series of rings or webs growing in the throat making it difficult to swallow. It thankfully is treatable. Unfortunately I will have to have a scope of my upper gastric system in order to pin point the problem.

A scope seems a bit daunting, after all they are going to shove a robotic camera down my throat, if I wasn’t stressed out before I think it is safe to assume that the stress level is rising, if only a touch. To be on the safe side the doctor had me jump up on the table for a quick exam. It seemed reasonable to me, so up on the crinkly paper I went. While I’ve had some good doctors over the years, it seems to me that I have had to build up a bit of a rapport before someone was this interested in listening, I was a bit perplexed. So while on the table the doctor got to talking about my “work”, where it was I worked, what I did there. These seem like reasonable questions from a doctor, however I know better, and like a watermelon being hurled from the pitchers mound I saw the next question coming down the pipe. “Can you get me backstage passes?”

Those of you who read my invectives upon the immune system will know that I work in the entertainment field and produce rock and comedy concerts. I am “backstage” every weekend at some sort of “happening”. I am the technical guy, the guy who makes sure that the lights and sound and the whatnot are erected to the shows specifications, and that the show’s specifications are not putting our building as well as out patrons in any danger. Very rarely do I have interest in the actual act on stage. We stick to pretty mainstream music here, enticing a pretty mainstream clientele. While music is terribly important in my life, I am not that interested in mainstream music. That being said, I am interested in people coming to see out shows, I am interested in the paycheck they give me, my family eating food, and the health care plan it provides us. Furthermore it gives me something to throw all my vitriol toward. It is true and not unfamiliar to most of you who have been reading that I am not particularly fond of this job. It could be worse I suppose, and I have gone into it in greater detail in other posts. Nevertheless, I have never ever been out right asked by a doctor, someone who only just met me, for something of this caliber.

I would imagine most of you would realize that a pass at any show isn’t something that is easily obtained. Furthermore, it has become apparent to me that many people seem to think that backstage is some sort of party, a large room where we all hang out eating food, drinking beers, playing guitar, hearing war stories from the artist. Allow me to burst your bubble: It isn’t. Actually it is a very mundane place with a lot of shut doors and security guards walking up and down the halls. This aside people still want to get back there. Anyway, as per usual I am way of track here.

So the doctor asks me if this is a possibility. I gave him my usual pat answer which is, “You can always ask.” Which if you read between the lines means no. He persisted a bit, but then quickly stopped, perhaps he was sensing my dismay over his ardor, and he quickly said, “But we have to get you better first.” I agreed.

I can already hear the comments from the blog peanut gallery: “Get rid of this guy” and the like, which of course was my first instinct as well. However, I figure he is working in a well respected office and I trust that he passed medical school. He seems to understand what he is doing and actually gave me some thoughts on possible reasons for the pain in my stomach and swallowing problems, which is far more than many have done in the last 31 years. That counts for something. Furthermore as we get further along in this processes I can always hold the idea of passes over his head like a carrot to a rabbit on a track. My job has to be good for something.

So that is issue one. May have something to do with MS it may not. We are not sure yet. April 14th is scope day. I’ll need a ride. They tell me they are going to put me to sleep. Not in the: I have a sick animal who needs a peaceful way out sorta thing, but the: here are some drugs so you don’t notice the robotic camera sliding down your throat sorta way.

Issue two is a bit more complex. Dear God, did he say MORE complex? He just wrote 4 pages on almost absolutely nothing. This is like an MS related episode of Seinfeld. “What is the deal with MS?” (Read with a Seinfeldian sort of feel. It’s much funnier)
Settle down, settle down, I’ll try to be brief.

No Empire, No More” was one of the first MS blogs I read. The author, pUNKrOCKfairy, was one of the first to comment here and I have been a devoted reader ever since. (Like all the other blogs I have mentioned she is also linked on the right.) She is currently in the middle of a Fingolimod trial, and has updated her blog about her experiences. Those posts got the gears under my bald scalp started a’turning.

Here I saw someone really taking their disease on. All of these blogs are about as close to interaction with the real life afflicted I come, and all the blogs have become an amazing outlet for me. While many of you have written thoughts and feelings that I have reflected upon and taken to heart, Punkrockfairy, unknowingly has actually helped light a fire under this bald guy’s posterior. I realized that I have been a passive observer in this battle for far too long and before I am sitting in a wheelchair saying, “Oh I should have….” It’s time to take a few cuts with the ol’ baseball bat.

So last week I sauntered (Well sauntered is a bit much, for one to saunter I would imagine they need complete control over their legs. Therefore, I did my best imitation.) into my Neurologists office and told him that it was time to move on from Copaxone. There is no apparent flare currently, but I can say that I just don’t feel well. I’m not how or who I am supposed to be. So it is time to move on.

It seemed that was all he needed to hear. He lit up and was ready to show me some options. This is where I am hoping for any thoughts on the situation. These are the options he presented me with:

Tysabri:

http://en.wikipedia.org/wiki/Tysabri


Alemtuzimab: (trial)

http://www.neurologyreviews.com/07sep/alemtuzumab.html
http://en.wikipedia.org/wiki/Alemtuzumab

Atacicept: (trial)

Sub-cu twice a week for 36 weeks.
http://en.wikipedia.org/wiki/Rituximab




First and most importantly I did let them know that it seemed that all of these drug names had been lifted out of an H.P. Lovecraft novel. It sounds as if they were dug up out of the bowels of hell themselves, much like this damned disease. Once I get past the probable Satan worship I am then left with the a few decisions. Tysabri is notoriously expensive, takes up a good chunk of time, and when I went in for the IVIG treatment last summer, there were a bunch of people having “ports” installed for Tysabri. Then of course there is that pesky risk of PML. Truthfully the PML is really the least of my worries. My insurance company is a far bigger fish to fry. Tysabri, however, is a very tempting option. The benefits seem to be something I can’t look away from.

On the other hand the trials come with their own positives. The relative absence of expense does not go unnoticed. As a matter of fact they pay me some nominal fee for my involvement. All my blood work, MRIs, doctor visits are totally taken care of throughout the trial. Furthermore I could be getting in on the ground floor of some really groundbreaking therapy. Yet as with all exciting ventures there is another side to the coin. All of the trials are double blind. So, there is a good chance I might be taking a placebo. Essential negating all of the “trying to better my health care”, and side effects are still to be determined. Despite this there is still a real draw in this direction.

So I am torn. What’s a guy who lost his hair at 16 years of age to do? Where does this same bald guy turn? I have done some research here on the internet, but the answers I get only lead to more questions. Sort of like a disease ridden episode of Lost. Nevertheless, I will be going in for an MRI next week, a few days after the scope. (It’s gonna be a banner week) then a follow up appointment to decide the next step. Regardless, it’s gonna be a long couple of weeks till I get this all worked out. I’ll be alright. I promise. How could I let you, my reading public down? So any thoughts, pep talks, or a secret antidote to MS is much appreciated.

5 comments:

LISA EMRICH said...

Wow, there's so much to comment on in this post. The first topic which interests me is the backstage issue. I've been backstage; I've been onstage; I've been reminded that orchestra members were not supposed to eat until a specific 30 minute time slot in order to fit in the crew, choir, and us. Never mind that horn players really dislike eating and having to turn around and play.

So, you've met MSers who were getting ports in for Tysabri rather than just going with the individual stick each time? Interesting. The cost of Tysabri is so completely variable that it impossible to predict until you've nailed down the TOUCH-approved facility, your insurance company, and the infusion charges.

It exciting that you simply went in a told your neurologist - no Copaxone. It will be interesting to see what treatment you decide to try. I might be tempted to try Rituxan, due to my RA which coms with the MS. Looking forward to your report.

BRAINCHEESE said...

I feel so "close to you", in a strange, Karen Carpenter sort of way...hehe (you may not remember her as she may have already died from NOT eating that sandwich while you were a little tyke).

I'd be more concerned if the GI doc wanted to be ON the stage than behind it...never met a doctor that could act or sing!

I say study up on the pros/cons of all your DMD choices...then...blindfold yourself and spin the bottle. That's how I make ALL my important medical decisions. :-)

Kelley said...

As Lisa said, lots of interesting issues. Please keep us updated on your GI issues and your DMD decisions. I'm still happy with my Copaxone, so I'm no help there.

Braincheese, I have a pediatrician friend who is a great actor/singer. We've done a few shows together. ;) So, doctors can act/sing.

Peace,
Kelley

Tracy Rambles said...

This comment is going to be a doozy of a rambler, Ben. Consider yourself warned!
First of all, thank you for the wonderful and sincere things you wrote about me. And it's absolutely fine that you change my name. I change yours too when I talk about you in my posts, if you've noticed. I just can't seem to bring myself to call you "BALD" Ben. Growing up in a family of men who held on to the last three or four hairs on top of their heads with all of their might, even thinking of uttering the word "bald" would get you into serious trouble.
And yes, I would throw myself in front of a cyber-bus for you. I consider you a friend as well and I always look for your comments when I need advice on things because I know you will be honest, whether I want to hear it or not, and I love that.
Also, please tell Mrs. Ben (I don't think my calling her "Honey" would be appropriate) for the very nice comment she left for me when I gave you the lemonade award. I have been extremely rude not to mention her sooner.
On to the next issue, your stomache. The nurse in me (and the always present, non-stop chattering, voice of The Doc aka The Hubs in my head) has to ask this question. Do you take a lot of Motrin, Advil, Ibuprophen for body aches, headaches, or general pain? Since this is an over the counter medication, it is not commonly known that Ibuprophen (and the others) can eat at your stomach lining, therefore, causing ulcers, gerd (heartburn), and other problems.
Knowing all of this, I did the same thing to myself in the beginning because I was in so much pain. Prilosec helped but you will see such a vast improvement if you still continue the prilosec and drop the ibuprophen.
If you don't take these, please disregard.
As for MS therapies, as you may or may not remember, I started out on Rebif and during the six months I was on it, not only did I not get better nor did it even come close to controlling my symptoms, I continued to get worse.
After six months, I had another MRI and it showed that, while on the Rebif, I had also grown a new lesion. My brain must be made out of Miracle Grow or something.
My neuro said that he felt that Tysabri was the best way for me to go but he wanted me to think about it before making any quick decisions. So, I thought, I researched, I talked to other people who were on it, had been on it, or were completely against it.
The one thing that kept coming up, especially with those who were against it, was the brain virus that is listed as a very unlikely side-effect.
After researching that, I learned that the situations, in which the people who were on Tysabri that then got the brain virus, were extremeley different from your average MS persons life.
I finally decided that if Tysabri gave me back even a tiny bit of the freedom and abilities that I had before MS, the benefits far outweighed the risks.
I have had four infusions, am due for #5 this Friday, and I must say that the improvements have been wonderful.
Sometimes you just have to take the risk.
I would gladly talk to you more about it if you want to email me. There are some certain things that I have learned that make life easier after infusions and even during infusions.
And you know that I wish you good luck and will support you with whatever decision you make!

pUNKrOCKfairy said...

I have always been flattered that you read me and comment, now my head might inflate to a threat of bursting at your compliments. Your kind words are timely too. I'm enduring a relapse which is particularly discouraging since I've just started the Fingo trial. It's nice to hear that someone thinks I'm doing the right thing. I have more to say about the trial thing and will post it all on my blog soon. For now... thanks.

I had similar tummy symptoms about a year ago and my doc suggested ulcer too. I was taking Aleve (only once a week) with my Avonex injections and like Tracy said, all those NSAIDs are hard on the goozle. My friend that's a GI MD says that stress, contrary to popular opinion, does not cause ulcers but ibuprophen and naproxen most certainly do. I took the Prilosec, laid off the Aleve (and ultimately the Avonex too) and haven't had a single twinge since. I hope your solution is as simple.

Oh, and the endoscopy should be no big deal. It sounds scarier than it is and the prep is WAY easier than the one you have when your other end gets scoped. They'll also be able to show you pictures of any ulcers you may have which will probably make you feel better because they really don't look all that bad. Plus, you'll get to go on a nice Propofol trip! Not to sound like a junkie, but it's great shit. You get to take a nice 30 minute nap, but you feel like you had the best night's sleep of your life when you wake up. My hubs came home after his scope and cleaned out the garage. Yes, it's that good.

About your doctors: I feel it's important to keep in mind that doctors are people too. We, as MSers are professional patients and unfortunately get the short end of the stick from the Wide World of Healthcare all too often, so I know we tend to be ferociously opinionated about physicians. It's easy to think of them only as gods or monsters, but of course they are somewhere in between, just like the rest of us. Some very smart, lovely people, have foolishly asked me for things FAR more inappropriate than backstage passes. I agree with you that it was very forward of him and think you should just follow through on your plan to use it as bait for him. At least you know you've got a neuro who will hear you out for only the usual fee.