Saturday, August 30, 2008



Solu-Medrol

08-15-08

Description

Methylprednisolone is one of a group of corticosteroids (cortisone-like medications) that are used to relieve inflammation in different parts of the body. Corticosteroids are used in MS for the management of acute exacerbations because they have the capacity to close the damaged blood-brain barrier and reduce inflammation in the central nervous system.

Most neurologists treating MS believe that high-dose corticosteroids given intravenously are the most effective treatment for an exacerbation. Patients generally receive a four-day course of treatment I had five days for one hour a piece. This high-dose, intravenous steroid treatment is then typically followed by a gradually tapering dose of an oral corticosteroid. Today is the last day of the pills

Corticosteroids may produce mood changes and/or mood swings of varying intensity. These mood alterations can vary from relatively mild to extremely intense, and can vary in a single individual from one course of treatment to another. Neither the patient nor the physician can predict with any certainty whether the corticosteroids are likely to precipitate these mood alterations. I can predict, and yes I was a right bastard. My wife is a saint.

Side effects may also include increased appetite Yes; indigestion oh yeah; nervousness or restlessness Call me Woody Allen; trouble sleeping It's quarter to 4 in the morning you decide; headache This is unfair really, if I breath I get a headache; increased sweating Like a preacher on Sunday; unusual increase in hair growth on body or face. lets be serious, I would welcome this one, but alas it didn't happen.
acne or other skin problems It's like Peter Brady on class picture day; swelling of the face I do believe that this has happened, but can't really tell. I'm always accused of having an inflated sense of self; swelling of the feet or lower legs not this one; rapid weight gain not rapid but this time around I gain three pounds; pain in the hips or other joints (caused by bone cell degeneration) Maybe pain in the ass, but the hips no; bloody or black, tarry stools thankfully No; elevated blood pressure Check; markedly increased thirst If the Hoover Damn burst I might be sated; menstrual irregularities I will have to say no here seeing how it would in itself be an irregularity had I started menstrating; unusual bruising of the skin only where the nurses missed the veins for the IV; thin, shiny skin haven't noticed this one; hair loss fine kick a guy when he's down; muscle cramps or pain I don't care how much water or potassium you think I am not injesting my body was just built to cramp. Once you stop this medication after taking it for a long period of time, it may take several months for your body to readjust.

* Since it may be difficult to distinguish between certain common symptoms of MS and some side effects of methylprednisolone, be sure to consult your health care professional if an abrupt change of this type occurs.

I hate this therapy, there is nothing pleasant about it. It often times seems that the cure is worse than the disease. Unfortunately I still feel ill. Doctors are unhappy with my exams. They are going to try a new treatment called IVIG.

Tuesday, August 26, 2008

I always wanted some of the perks of the famous, but this is ridiculous

In the three plus years that I have been diagnosed with MS there is one thing that I hear more often then anything else, "Did you know Montel Willams has that?" The answer is of course, "yes." or I hear "Richard Pyror died from that, right?" Well, no, not actually died from it, but he was in pretty bad shape because of it.


I hear about Teri Garr or Meredith Vieira's husband (Richard Cohen, sorry Richard, don't mean to make you live in the shadows of your wife, but it's what I hear). I think the unflinching cruelty really hits home though when people realize that even the great Andrew "Squiggy" Squigman from "Laverne & Shirley " can be cut down by this disease. There is no justice. So I guess I could be in worse company. However it is a club I would gleefully rescind my membership from. I know we all would.

I hesitated to start this blog. There is a certain level of feeling so self conscious about writing about myself, but more to the point I am not sure that I can adequately express myself on the subject of MS. While those of you who know me are well aware of my disposition to make an ass out of myself on a daily basis, I'm not sure that MS is the right subject for me to discuss.


Let's be honest, I am a huge ass. This is one of my God given talents. However when it comes to my health, my disease, are jokes appropriate? This leads me to one of the things I tell people. I have to laugh because if I start crying I don't know that I can stop. This is true for all of us. There are terrible things all around us, and if we really stopped to truly digest it I'm not sure that any of us would go on. However that being said, I don't plan a laugh riot here. Just a few thoughts on the things I am going through.

If you are reading, and you have some words of encouragement, advice, thoughts, please let me know. If you know me, you know I love to talk about myself. If you don't, you are reading a blog about me so I would guess it's pretty apparent I like to talk about myself. I'm not trying to be conceited though, just trying to make sense of something that has no answers.

Monday, August 11, 2008

I don't mean to be a downer but I've got an incurable disease.

I have Relapsing Remitting Multiple Sclerosis.
I was diagnosed in April of 2005.
I had one relapse that summer.
I have just started my second.
Today I started a course of intervenous steroids in hopes of staving it off.

I can hear you now, "oh wow, Ben, I had no idea. You look so healthy. You're so thin and handsome. I mean if you weren't married I...."
Well I get the idea, and I appreciate the thoughts, however it is true. I have MS. I have had it for a long time, longer than any doctor seems to be willing to say. While I don't keep my condition a secret, it is often times not a good conversation starter. It sorta kills a mood.

"How are you?"
"I've got an incurable disease."
"Oh..."

See what I mean? Just doesn't leave a lot of room for exposition. So sometimes it gets pushed under the carpet, and people who should be in the know aren't. It's nothing personal, I'm really just not trying to hog the conversation.

So eat it, I got an incurable disease. Wanna fight about it. Figures you pick on the crippled guy.

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So I guess first thing is first, some who are reading may not be aware of what Relapsing Remitting Multiple Sclerosis is. So here is a quick overview.

From the National Multiple Sclerosis Society web page.

Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another. Today, new treatments and advances in research are giving new hope to people affected by the disease.

The body’s own defense system attacks myelin, the fatty substance that surrounds and protects the nerve fibers in the central nervous system. The nerve fibers themselves can also be damaged. The damaged myelin forms scar tissue (sclerosis), which gives the disease its name. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing the variety of symptoms that can occur.

There are four different types of MS. I have the most common.

  • Relapsing-Remitting MS
    People with this type of MS experience clearly defined attacks of worsening neurologic function. These attacks—which are called relapses, flare-ups, or exacerbations —are followed by partial or complete recovery periods (remissions), during which no disease progression occurs. Approximately 85% of people are initially diagnosed with relapsing-remitting MS.

Since no two people have exactly the same experience of MS, the disease course may look very different from one person to another. And, it may not always be clear to the physician—at least right away—which course a person is experiencing.

The long and short of it is this: My anti-bodies have freaked out. As anybody my anti-bodies fight off the standard flu, cold, or run of the mill sickness. However my anti-bodies are currently on a seek and destroy mission for anything that looks like my Central Nervous System. No one knows why and there is no cure. This is a problem.