Thursday, April 30, 2009

EosinoWhat? No thanks I had a big lunch.

So the week has come and gone, and honestly I feel I have just as many answers as I had the last time we all convened at this URL. Two tests, a few conversations with doctors, a couple of appointments established, and no closer to any sort of truth then I was before the tests.

The scope:
You would think after all these years of going to doctors and making appointments I would give priority to actually noticing the time a receptionist set aside for me. However being the bon vivant (excuse my French) I am I chose to just rely on my lesion addled brain. Bad Idea. Up until the day before the scope, I went on believing that I was due in at 7am. Imagine my chagrin when I read the paper work and realized that the appt. was actually at 3:30pm. The MRI a few days later was at 7am.

“ No big deal” you say, “it gives you a couple of extra hours to chill with the kids.” I suppose on one hand you'd be right, but on the other hand you had better have a sandwich because this beyond thin bald guy had to go the whole day without water or food. Needless to say I was a right bastard by the time I checked in at the scoping facility. My head was pounding, my stomach was growling, my mouth was dry, and oddly enough I just wasn't looking forward to the procedure. After a short wait in an overcrowded waiting room I was checked in and ushered back into the medical facility. They pulled the curtain, handed me a plastic bag and told me to strip down. It was time for that ever loving hospital gown.

Let me go on a bit of a rant here.....(strange, I know) those hospital gowns...
Look I have been in and out of hospitals, stomached lots of procedures, and even taken a few unwanted "joy rides" in ambulances. My medical knowhow and the ability to navigate my way through any of the above mentioned scenarios has grown greatly for all of those experiences. Still with all of this “knowledge” I have yet to learn how to affix these damned hospital gowns. Do I put it on with the opening to the front or to the back? Do I tie the right side to the left side or the left side to the right? How am I supposed to reach my own back and tie the gown myself? I'm not double jointed here people, contrary to popular belief, I am just your average bald guy with MS. I swear I went to college. I even graduated pretty high in my class. Still, even with a fancy degree, these thin cotton shammy's confound me every time I step behind the drawn curtain. Every facility has a different take on where the "opening" should be, and enviably I end up walking out with some part of my anatomy waving. Great. This is ridiculous. How has this become the height of my anxiety, particularly when I know there is a throat camera with my name on it?

Anyway, after wrestling with the gown I opened up the curtain and waited for the nurse to come hook me up to all the contraptions that I needed to be hooked up to. I hoped she was also going to hook me up to a hoagie, but I wasn't holding out much hope. (An aside: for those of you not from the Great American Northeast and more specifically the Philadelphia area, a “Hoagie” is a large sandwich that is served by any self-respecting deli. Many people outside of the greater Philadelphia area would refer to such a sandwich as a Sub. If you come to Philly and ask for a Sub you will be promptly directed to the Delaware River. Not because there is a submersible ship there, but because you should jump in. I can get into the finer points of sandwich making later, but know there are differences, fundamental differences between a hoagie and a sub.) So I got my O2 on and a nice, warm blanket before the anesthesiologist made her way over to prep me for my drug intake.

Another rant ….(yeah, two in one post, wow) Do all anesthesiologist look like they have been dipping into their own stash? I have run into a few of these mavens of ether and I have always felt that there might be a little something going on that I am not aware of, and this woman was no exception. She was beyond pleasant. Pleasant in a way "normal" people (who live in Philadelphia) aren't. In fact, I’m not sure if that very thin face ever dropped that far away, spooky kinda smile. But what I am sure of is this: I never, not once, saw her blink.

I’m not kidding, not one pasty second to re-moisturize those gray globes hanging rigid in her skull. They just stared. I began to get the feeling that her eyes were somehow in control. The rest of the face was telling me, “I’m alright now, but I’m wound a little too tight, make sure you are not in the way when I ‘unwind’.” It was just like that 8 hour Jesus movie that you see every Easter. Jesus never blinks. In 8 hours the poor guy never blinks. After 33 years of that I would be crawling up on that cross too. All of this and no drugs had been introduced yet. “We’re gonna need a lot a CC’s of something stat!”

Where was I? Right, anesthesiologist. So, she hooked me up to an IV and told me we would be rolling into the procedure room in just a moment (She motioned with her eyes). At that the fire alarm went off. Nurses rushed around shutting doors and saying, “I think this is just a drill.” Because of my line of work, I am pretty well versed in fire safety and regulation, and I understood the closing of doors. Furthermore I understood the staff’s hope of a drill. However, I did not feel comfortable with the crux of the sentence being “I think” and no one seemed to be all that interested in looking into the viability of the “Drill Theory”. The anesthesiologist assured me that they would be wheeling me in a moment, meanwhile the fire “drill” (or impending doom, whichever.) kept rolling along. I waited patiently for a few minutes when I heard the phone ring. A nurse said, “Oh it is a drill, great,” letting out a sigh of relief, “Thanks for the call.” This, of course, only led me to wonder about their fire procedure, the staff’s readiness, and the facilities heads up as to when a drill will be conducted. Although I didn’t have much time to really ponder this quandary as “blinky” the anesthesiologist wheeled me into the procedure room.

In the room I met a few new members of “Team Scope 2009” and the GI doctor that had apparently informed the crew as to my profession (see last post). A few pleasantries were shared, a quick rundown of the procedure, and the latent discovery that one of my nurses really really likes the band Styx. (Incidentally, Styx will be performing on one of my stages this summer, which means that she had found out where I worked and then looked at our schedule. It seemed kinda intense to me, but I guess this is just something I’ll never get used to. Also, I really dislike Styx, but that’s another discussion for another time, perhaps when we get together to talk about Hoagies.) At this I thought I heard Jesus, but it was just the lidless wonder behind me informing me that the cocktail had just begun and I should be feeling a little sleepy. At that I got real tingly and said, “oh yeah, I feel it.”

The next thing I remember I was being patted on the side and told to wake up. I opened my eyes to see one of the nurses and my wife coaxing me back to consciousness. (Actually I saw two nurses and two wives. Common with my MS and I am sure it is common after being drugged into unconsciousness.) The nurse asked if I was alright, to which I sleepily responded, “I had a dream and you were there and you and you.” She didn’t crack a smile and told my wife that, “He is still groggy.” My wife told her, “No, he’s always like that.” I smiled in a blissful assent. Once I was a little more “with it” the doctor came over to deliver the results. He said while there was a lot of evidence for acid reflux, a callus at the base of my esophagus, and some evidence of gastroenteritis, he didn’t see much else. No webs in my throat, no ulcer. He told me he took a biopsy to check for one other problem that could be the root of my discomfort, but for now to just stay on the Prilosec. He gave me smile, a pat on my shoulder and told me to make an appointment.

Good news, right? Well, most would say so. The problems he found aren’t too crazy and can totally be corrected. That is great, but I also have to say that I was deeply disappointed with these revelations. I am no masochist; I am not looking for more problems then I already have. I am not tied to some great romantic notion of the hopelessly broken boy who perseveres despite the desperate circumstances around him. I am just looking for answers. I have had some sort of swallowing problem for most of my life. There is no doubt that it has ensured that I lose weight regularly, and very rarely gain it. Eating is a utilitarian process in my life, very rarely done with any pleasure. Not that I don’t like the taste or enjoy well prepared food, but it is always like tripping through a mine field with every swallow. I chew everything to oblivion before it makes its way to my gut, a process that makes me the last one at the table generally with cold food.

I had such hope that this doctor was going to see something and say, “ah ha, this is your problem, and here is how we fix it. You will be overweight in a month.” I suppose it is kind of sick to hope for medical conditions. I am just tired of feeling like I have somehow, when I was a boy, created this issue in my head, and have just perpetuated it for the last 20 years or so. I suppose I had quietly convinced myself that, April 14th, was going to find me the same relief I got when I was diagnosed with MS. I realize I do sound like a sort of Munchhausenian imposter finding some happiness in illness, but this really isn’t the case. Of course being diagnosed with MS, was its own brand of hell, but there was a certain level of liberation when I was told that my demons had a name: Multiple Sclerosis. I suppose I had hoped that the scope would just supply me with another name.

We now interrupt this blog post for a special report:

So the above couple of paragraphs were actually written last Friday. On Saturday of that week, while out on my front porch enjoying the summer like conditions for the first time this year, trying to prohibit my sons from chewing on the sidewalk chalk that they were graffiting my walls with, the friendly neighborhood mail carrier made his way to my stoop with a pile of mail. In said pile of mail, besides the gas bill, the electric bill, and the Baby Land’s End catalog (why we get this is far outside of my realm of comprehension, furthermore why such a catalog even exists is even a greater mystery) was a letter from my Gastrointestinal doctor. I assumed it was some sort of bill. A dispute of what they felt they were owed and what the insurance company felt was not their responsibility. Imagine my surprise when I opened the beige envelope to find the results of my recent biopsy. Take a look….

Honestly I almost stopped reading there. This was all the info that I had gotten just after the procedure. It seemed this was some sort of formality from the office, a way to cover their posterior of certain liabilities, and another reason to kill a tree. I took a quick look at the rest of the letter. Realizing it was short, and figuring my kids couldn’t consume a whole piece of chalk before I got to the end, I kept reading. It was the next paragraph that really gave me the goods.

Eosinophilic Esophagitis


This was the condition that the doctor had referenced numerous times in the office all those weeks ago, and it was the same condition that he told me there were no signs of after the scope. Talk about mixed signals, I feel like High School Freshman on Prom Night. ( I have no idea what that means, but it sounded like something that might be confused)

Well, I guess I got my wish, and even an excited congratulation from my wife (thanks, Honey). Now I have some sort of diagnosis, a name to the face if you will, and it is on ward to “how do we treat it”? How do we correct it? The little bit of research I have done seems to point toward a solvable problem. I really really really hope that this is the case. Man what a roller coaster.

We now return you to your regularly scheduled blog post.

I’m not going to get into the MRI here. There is not much to say. Although I’m sure that if I got rolling I could fill three or four pages about it, but I’m feeling benevolent today. I won’t subject you to that. After all, we are all champs of the whirling magnetic dervish, and we are aware of the non-event it normally turns out to be. The long and short of it is, I got to see the new fancy facility at my old fancy hospital. It was very posh. I felt like I should have been offered a cappuccino or had someone place cucumbers on my eyes; lots of leather and steely silence. At this new fancy facility they have new fancy MRI machines. More powerful they say. (“All the better to see you with.” The wolf smiled to the little girl.) It seemed like a bonus, but somehow the stronger machines prolong the scans. It still turned out to be about the same amount of time. I took a little nap, listened to the almost musical machine gunning sounds around my head, and after 2 and a half hours or so I made my way home. We won’t have any results till my doctor’s visit in June. That’s when all the heavy lifting will be done concerning my medications and what not.

So that’s the latest here in Bald Ben world.

How are you?

Wednesday, April 22, 2009

What do you get a girl three years later? Leather and Glass

Three years ago today the skies opened up and unleashed a torrent of rain like I had never seen before. The wind lashed at the trees, the rivers began to overflow, and small dogs were seen to put on those floaty things "just in case". There was no time to build an ark, and besides I don't think even good ol' Noah had enough cubits for this one. I had to be tough, like a mail carrier, I couldn't let a little water deture me. I had to get to the church.

You see I had a date. We had set it up a few weeks before. We had promised to meet at the place of worship down the street from my house. Turns out I met a pretty nice girl. She thought I was alright and we started hanging out quite a bit. One day we decided we didn't want the hanging out to end. So we called a priest, filled some paperwork at city hall, and asked a few of our friends to swing by.

This was the front of the invite

On April 22nd 2006 Angela and I said I do. This was part of the inside

I wish I had a lot of great insight or deep things to say about the last three years or even marriage in general. Truth is I am tired. I'm not thinking all that clear. We put together a CD of songs as our wedding favor (cover is above) on the inside cover I wrote a short story about how Angela and I had come to be. It was really the first time I had written something and put it out for the world to see. I am glad it was about us. So with out a lot of extra words here is what I wrote three years ago.

How Could I ever have known that my future depended on Bruce Springsteen?!

The summer of 2003 found an auspicious pair enrolled in a sort of Rock and Roll boot camp. We both, Angela and I, were slaving away at a series of stadium concerts that August, when the boss himself came down from on high to divinely intervene.

While digging up a new walkie talkie battery, I over heard a girl softly singing a Gillian Welch song. My interest was piqued and we soon became friends. (Friends only if you consider the fact that Angela was making up mean drawings of me being below a dirty sock, but that’s another story) As the summer and stadium work progressed, we found a tired solace listening to Neko Case in my car, as I drove us to our respective homes at the suggestion of Angela’s sister Amy.

Mr. Springsteen made a triumphant return to Philadelphia at the end of that summer and Angela and I were about to drop, but God made Rock and Roll and I guess we were its servants. So we kept pushing through. The work was long and the shows were “Born to Run”. Well, I did the rockin’, she did the laughing.

The stadium shows ended and work carried on for me. Angela and I stayed in touch and I thought of her often. As the summer drew to a close I found myself at a concert for Radiohead and Angela was going to be there. We spoke briefly and during the show I went out to find her. Unfortunately 26,000 other people liked the band as well, and none of them seemed to know who or where Angela was. Giving up, I wandered down toward the front to catch a bit of the show. When by accident, fate, or by the hand of the Boss himself, I ran head long into her as the band broke into “Nice Dream”. I should have kissed her right there. It was one of those movie moments, except I didn’t need a boom box over my head. I had the damn band playing for me right there. To say that I realized at that moment we would be here today would be a lie. However, if there was just one moment, that might have been it. My life was changed. There was no letting this one go. It wasn’t too long after that we became inseparable. These songs reflect a lot of moments in our relationship. While not all of them are love songs they take Angela and I back into out relationship. From discovering new music, or uncovering music that had eluded us over the years, they hold special significance for us. I told Angela once that we could never split up: we would lose so much great music that binds us together

We hope you enjoy these songs as much as we have.


The simple truth is I love you. Thank you for being my wife and my friend. Thank you for being who are and all the support that you give me. Here's to three more good ones.

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(, Cuban Alien Conspiracy (, or this (

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:


Alemtuzimab: (trial)

Atacicept: (trial)

Sub-cu twice a week for 36 weeks.

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.