Know Multiple Sclerosis

Wow - so I started my new job this week and it's been a blur. I'm commuting 90 minutes each way (last night took 2 hours because of a police chase at the train station which I got to watch....awesome) so it's been quite an adjustment. Soon I'll have a laptop set up to work on the train.

But the job is awesome. The work is cool, the people are cool, and the environment is cool. I'm hoping to achieve a good work/family balance after I get settled down.

By the time I get home at night, I'm exhausted. I don't necessarily think it's the multiple sclerosis (although I'm sure that doesn't help). It could just be the 12 hour day. In any case, I'm going to have to be cognizant of the MS and my health. After you've had MS for some time, it feels like a relationship. You know what makes it happy, you know what makes it mad, and you know how to calm it down if you make it mad.

That's a good lesson for any of us. Watching stress levels and fatigue can be a very important way to keep MS in check. Eating right, taking meds, and exercising are also good tools. This new job is a big test for me - I'm confident I know my MS well enough to manage everything - we've been together for 10 years.

Posted by admin on March 20, 2008 01:22 PM | Permalink

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So I'm preparing for a big life change: I'm changing jobs. Yes, I know - in the list of most stressful events in a person's life, this one ranks relatively low. Still, it's a big deal and the multiple sclerosis makes it an even bigger deal. So many things to think about - work/family balance, the stress level and the health insurance are the big ones for me.

So here's a little background for those who are interested. I'm 32 years old. I've been in the same job for a little over five years. I have two young kids. I work 20 minutes from home in a very stable government job. All of that will stay the same except for the last item. I'll now be working in the city which is an hour train ride from my house. It's a small company where I'll no doubt work more hours. But it's a potentially good career move and I feel like I need a change.

I researched the health insurance and the company provides good options. I'll have a laptop so working on the train and at home are options. It's a company I've been interested in for some time. It just feels right.

Who knows? I might fall flat on my face. But multiple sclerosis has taught me some important lessons and one of those is to not take life for granted. I guess I'm following the old saying, 'It's better to regret the things you've done than things you didn't.' It's a manageable risk in my opinion and, despite the fears of change, I'm looking forward to what's ahead.

Posted by admin on March 7, 2008 12:22 AM | Permalink

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I was guilty of taking my health for granted before being diagnosed with multiple sclerosis.  Now that I've been on medication for eight years, I take it for granted again.  I'm someone who has done very well with an interferon treatment.  It's not until I read a story about someone dealing with some of the horrible symptoms of MS that I stop and remember how fortunate I've been.

As I stop to reflect on things, I clearly remember the fear I felt when my first symptoms appeared.  First, the fear of not knowing what was causing my numbness.  Then, once finding out it was MS, the fear of not knowing what the future would hold.  I remember wanting to go back in time a few months before any of this started so that I could live what seemed like a worry-free life again.  I remember worrying about what my fiancee would have to encounter.  I remember wondering if I had the strength to face obstacles ahead.

It's not hard to recapture those thoughts and fears.  They are still very much part of me.  I think it's a useful exercise to revisit them, as it gives me a lot of reasons not to take anything for granted.

Posted by admin on February 8, 2007 02:25 AM | Permalink

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Every two years, I go in for an MRI to monitor the progression of the disease (or at least see if there are any changes in the count or size of the lesions on my brain).  After seven years of interferon treatment, I have had no additional MRI activity.  This correlates with no new symptoms as well.

I realize I've been very fortunate - some people respond very well, others do not.  My neurologist told me the difference in results is because each individuals' immune system is unique.  He has other patients who have been on various interferon treatments since they were first introduced in the mid-1990's - some have done exceptionally well, others have not.

I asked if I could continue to see good results over the next 10, 20 years.  The data is only about 15 years old, but so far it suggests that if someone responds well, they will continue to do so.   The safety data is also encouraging.

The reason I share this information is because, with this web site, I always try to put myself in the position of the newly diagnosed.  I would have liked to have heard stories from others who had the disease for some time, and who had done well with it.  It wouldn't be a guarantee that I would do well; but, at least I would have known there was a reason for hope. 

Posted by admin on November 29, 2006 04:43 AM | Permalink

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The spinal tap must be one of the most feared medical procedures.  When I was told I needed to get one, I was a tad nervous.  The spinal tap is another tool doctors can use to help in diagnosing multiple sclerosis.  It's been eight years since I had mine, but I thought I would share a little bit about what it was like.

It started with checking into the hospital.  After I signed all the paperwork, a nurse brought me to a room where I could undress and put on the gown.  Before I go any further, I must say that I had never been to a hospital before.  There, I had to say that before I mention the next part.  The nurse returned after I was dressed in the gown and burst out laughing.  You can imagine my surprise.  She told me to go back in because I had the gown on backwards.  I had tied it around in the front, but turns out the opening goes in the back.  Yeah, that's right...not the sharpest pencil in the box.  I was off to a great start.

They brought me into my room and the doctor explained the procedure to me.  They first numbed the area with some small shots.  I was lying in the fetal position while he inserted a needle into my back.  He told me to tell him when the pain was too much.  At no point was it unbearable, and I'm not all that tough.  I don't know if it was the doctor adminstering it or the medication which numbed the area, but I felt very little pain.  It's different for everyone.

My spinal tap results came back consistent with multiple sclerosis.  My original neurologist didn't tell me that for many months.  When I asked about them, he said they were slightly abnormal but didn't indicate any particular disease.  A full nine months after the spinal tap, he was ready to send me on my way.  I asked for a brain MRI which confirmed MS.  I would encourage people to be vigilant about finding out exactly what test results indicate.  I spent nine unnecessary months (I know many people spend much longer than that) waiting to find out I had MS.

Posted by admin on November 15, 2006 02:11 PM | Permalink

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Some events in life force us to make decisions.  MS made me think about what I wanted to accomplish in life.

At the top of my list was having kids.  With the unpredictability of MS, I decided sooner was better than later to have them.  Now that we have kids, it's impossible to imagine life without them.

I think something like MS gives people a unique perspective.  Certainly, it's easier to appreciate each day.  It forces people to recognize how fragile life can be.  And, since it often affects very young adults, that is something they probably have never faced.

MS has made me grateful.  Grateful that things are going well and that I'm able to do anything I could before the MS.  Grateful that there are a lot of people dedicating their lives to helping those with MS.  Grateful that I've been given a little better perspective than I would have without MS.

Posted by admin on September 12, 2006 04:00 AM | Permalink

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During my Junior year of college, I remember hearing that country singer Clay Walker had been diagnosed with multiple sclerosis.  I clearly recall thinking, "How could you deal with something like that when you're so young?"  Little did I know I would be facing the same situation just a few years later.

After being diagnosed, I was curious how Clay was doing since I hadn't been following his career.  Not knowing much about MS, I figured his career was over and he had been through very difficult times.  I was happy, and relieved, to find out he was doing well and his career was still strong.

I appreciate the fact he revealed his MS, because I know it helped me when I was first diagnosed.  I saw him as an example of how MS could be managed in some cases.  This was reassuring during a difficult time.

Hopefully, this website provides someone with some hope that MS can be managed.  That's not to say everyone will do well - but some do.  Just like with any disease, each case is individual.  Some medications work better for some people than for others.  But, with scientists learning more about the disease all the time, I believe there is reason for hope.

Posted by admin on September 1, 2006 05:36 AM | Permalink

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I have been taking one of the interferon-beta drugs to treat multiple sclerosis for seven years.  It is an injection I give myself in my leg.  I remember not liking needles when I first started taking it - that feeling went away with time.  The shot does not hurt.

With my first injection of the drug, I felt empowered.  For the first time, rather than worrying endlessly about things I couldn't control, I was taking control and doing something to help myself.  It was a very good feeling.

For the first few months, I got very bad chills a few hours after the injection.  I would shake and feel cold for several hours.  I also had flu-like symtoms (achiness, fatigue) for about 24 hours.  The chills side-effect improved every week and, after several months, completely disappeared.  I still get body aches for 24 hours after the injection, but that is easily remedied with ibuprofen.

I credit much of my success with multiple sclerosis to this drug.  I've had multiple follow-up MRIs done since diagnosis and they have shown no progression of the disease.

The drugs available today do appear to impact the progression of the disease.  That is something people with multiple sclerosis didn't have until the 1990's.  Think about that - what a fortunate time to get the disease if you're going to get it.  We live in an exciting and hopeful time.  Much of the research related to AIDS has advanced our knowledge about the immune system, and diseases such as multiple sclerosis (thought to be immune-related) have reaped the benefits.

Posted by admin on August 22, 2006 06:01 PM | Permalink

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My first symptoms appeared during my senior year of college.  I was playing touch football and started to get blurry vision and dizziness.  I noticed if I sat down and rested for a few minutes, the feeling went away.  But, after getting back in the game, the vision problems would return.  I visited an opthamologist who recommended I get new glasses, which I did.  Since the symptoms only appeared when I got hot, I found myself avoiding those situations.  Everything seemed fine.

After graduating from college in August 1998, I moved to California to work for a software company as an engineer.  The first few months of the job were very stressful, and in October of that year I woke up one morning to find the right side of my body was numb.  I couldn't feel pain or hot/cold sensations.  I feared the worst - a brain tumor or something terminal.

I found a neurologist who did an MRI on my spine and a spinal tap.  My spinal tap, despite the many horror stories I heard, was not very painful.  The results of the spine MRI showed two lesions.  The neurologist said the spinal tap indicated only "slight abnormalities."  I didn't pursue those results, probably for fear of finding out too much.

I went in for monthly visits from October 1998 through June 1999.  The numbness disappeared and no new symptoms presented themselves.  In June, the neurologist was ready to send me on my way.  I asked for a brain MRI just to reassure myself.  After the MRI, I called his office to find out the results.  I was told over the phone by a receptionist that I had lesions and I needed to schedule an appointment for the next day.

I remember driving home from work that day and wondering what I was going to do.  I was 23 years old and getting married in three weeks.  I hadn't had a chance to have kids yet...my adult life was just beginning.  On the other hand, I was relieved it was multiple sclerosis and not something terminal.  My visit with the doctor the next day was filled with questions about why he didn't catch this earlier and what my options were.  He gave me three pamphlets from the drug companies and said to decide which treatment was right for me.

My fiancee at the time was amazing with her support and love.  I explained I didn't want to be a burden to her - her response was that she would love me regardless of the challenges.  She made everything much easier.

I called the National Multiple Sclerosis Society and got a referral for a new neurologist.  He is still my neurologist.  He recommended an interferon drug, and I've been taking it ever since.  I have been relapse-free for almost eight years. 

Posted by admin on August 22, 2006 03:35 PM | Permalink

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I am 30 years old.  I was diagnosed with multiple sclerosis in 1999, at the age of 23.  My first symptoms appeared in 1997, and the time between initial symptoms and diagnosis was filled with anxiety and uncertainty.  I have created this blog to attempt to reach out to others in the community affected by MS, particularly the newly diagnosed.

Posted by admin on August 22, 2006 03:09 PM | Permalink

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