Know Multiple Sclerosis

I'm not sure I've ever felt the fear that I felt on the day I found out I had multiple lesions on my brain. I had an MRI done a few days earlier and I called into my neurologist's office to get the results.

It was June 1999, three weeks before my wedding. I had been seeing this doctor since October, 1998, when my first symptoms appeared. I had numbness and tingling along the right side of my body. The symptoms disappeared after several weeks. No other symptoms had appeared since October. He was ready to send me on my way and I asked him to do a brain MRI just to rule out MS. He hesitantly agreed.

I called from my work and got his receptionist on the phone. She proceeded to tell me that I had multiple lesions on my brain and that I needed to set up an appointment right away. I immediately noticed my heart racing and my face getting flush. I went to my boss' office and told him I was ill. I left work and remember driving home wondering what this meant. Would I be able to have kids? Would I end up in a wheelchair? Should I still get married? I was a wreck. I was also wondering why in the world a receptionist would be telling me that news over the phone rather than the doctor himself.....

When I got home, I told my then fiancee and she was amazing. She told me we would work through it and things would be OK. We got married three weeks later and I started Avonex upon getting back from our honeymoon (incidentally, I did change neurologists). The multiple sclerosis has been under control ever since.

I tell this story because I want the newly diagnosed to know that it is normal to feel scared and sad; but, there is reason for hope.

Posted by admin on November 24, 2007 03:13 PM | Permalink

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I've talked to a lot of people who are still waiting for a definite diagnosis with MS.  There's not a single test for multiple sclerosis, so neurologists will analyze the results of MRIs, spinal taps, patient history, etc. to determine whether or not someone has the disease.  It's frustrating waiting to find out what's wrong.

From initial symptoms to diagnosis, it took me about two years.  It started with blurry vision in college.  An opthamologist told me I needed new glasses and, like MS tends to do, it went away for a while.  Then, it came back with numbness along my right side.  I saw a neurologist for nine months before he decided to do a brain MRI.  When the MRI came back with lesions, I then sought a second opinion.  But, nine months had already passed.  I should have sought a second opinion much earlier - I'm not really sure why I didn't.

The difficulty in diagnosing multiple sclerosis is just, unfortunately, part of the deal sometimes.  Finding a neurologist you trust is key.  The National MS Society referred me to a great neurologist.

The 'waiting for diagnosis' period is very hard.  Not knowing is difficult.  Once I knew, then I could begin to deal with it.

Posted by admin on November 6, 2006 02:43 PM | Permalink

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I assume this is a question anyone diagnosed with MS has asked.  There's no clear answer yet.  It's thought that people have a genetic susceptibility which, when triggered by an environmental trigger (e.g., virus), causes the disease.  If it's immune-related like it's thought to be, somehow the immune systems gets miswired into attacking the body's own central nervous system (specifically, the myelin sheath which is the protective covering around nerve cells).

Some general facts about MS:

-Most people with MS are diagnosed between the ages of 20 and 50, often times in their 20's and 30's.
-MS runs in families sometimes, but not always.
-MS is more prevalent in certain geographic areas.
-MS affects more people with European ancestry, although other backgrounds are affected as well.
-MS affects nearly twice as many women as men.

Posted by admin on September 27, 2006 04:20 AM | Permalink

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MS is unique for each individual.  Symptoms, progression, and response to treatments are just some of the things that vary by person.  I've read that some research suggests that, rather than being one disease, MS is actually a set of related diseases.  If this is true, it would help to explain how it presents itself in very different ways for different people.  I think this is both frightening and encouraging.  It's frightening that, as much as we've learned about MS, there appears there may still be so much more.  But, it's encouraging that we're making progress and perhaps this new way of thinking about the disease will give us more options down the road.

Upon being diagnosed, I took comfort in the fact that MS is unique.  That meant there was hope.  While I wasn't guaranteed that I would be one of the best cases, I also wasn't guaranteed to turn out like the worst cases either.

It's still scary thinking about how little control I have over the disease.  I can take medication and try to live a balanced life, but in the end it's the way the disease works within my own body that will determine things.  I suppose we all strive for control of things that are uncontrollable.  Look at how superstitious people are when they gamble:  they have certain routines which they think brings them good luck, and so they follow them every time.  It's ridiculous.  I don't care how I hold or throw the dice, I have no control over how they are going to land.

WIth something like MS, part of acceptance is learning what can and cannot be controlled.  At least we can control a lot more today than people with MS could twenty years ago.

Posted by admin on September 21, 2006 05:04 AM | Permalink

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The "Why me?" question was certainly one that entered my mind after being diagnosed.  Some wonder what they have done to deserve this.  Some feel that life is out to get them.  It's a slippery slope and often leads to feeling like a powerless victim.

I think a more appropriate question is "Why not me?"  Statistically, the chances of any one individual developing multiple sclerosis are small; but, the chance of someone developing multiple sclerosis is 100%.  Why shouldn't that someone be me?

This can be applied to a lot of things, and there are much worse situations to be facing than getting diagnosed with MS.  Actually, even the ability to ask the question "Why me?" is a bit of a luxury.  An obvious example of this would be any of the people killed in car accidents today.  They woke up this morning just like every other day, got in their car, and instantly they are gone.  Those people never had the chance to ask the question.

Posted by admin on September 6, 2006 12:50 AM | Permalink

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After diagnosis, I remember the fear of not knowing what was ahead.  Even without MS, we all know that nothing is certain, and things could change at any time.  Something like multiple sclerosis forces us to face that reality.  It can be quite scary, especially for a young adult.

I wanted to hop in a time machine and find out how I would be doing 5, 10, 20 years down the road.  At the same time, part of me feared that I wouldn't want to see that reality.

One of the most difficult things I found with the MS was the uncertainty.  I felt like everything was out of my control.  Turns out, much of our lives is out of control - it's finding those things I can control which helps me.  Those are taking medication, reducing stress, sleeping enough and in general trying to take care of myself.

There's not a clear prognosis for those diagnosed with MS.  I've read that the amount of disability present after five years can be an indicator.  But, the fact is that most of us just have to wait and see.

That said, regardless of the MS, who knows what will happen to anyone at any time?  Multiple sclerosis is a reminder that life has no guarantees; it is not a guarantee that life will be destroyed.  Any one of a million different factors could positively or negatively impact someone's life...MS is just one of them.

Posted by admin on August 28, 2006 11:39 PM | Permalink

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When you have MS in the United States, you must learn about health insurance.  It could save you a lot of money and headaches by just learning the rules.

Much of the information you can get by visiting your health insurance company's website.  They should have a list of medications they will agree to pay for (formulary) as well as doctors who are in their network.  Much depends on what type of plan you have (e.g., PPO, POS, HMO, etc.).

I have had to follow up with my insurance companies many times to get benefits which they initially declined.  They have always been willing to work with me.  One important point is that many insurance companies require prior authorization before you do certain procedures (such as MRIs).  I always check and double-check that the prior authorization has gone through before I have procedures done.  I'm not an expert, but I know enough so I'm aware of what is and what is not covered.  

Some of the treatments for multiple sclerosis cost over $10,000/year.  Learn as much as you can so you can maximize your insurance benefits.  It could save you a lot of money.

Posted by admin on August 24, 2006 02:57 AM | Permalink

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There are, of course, those willing to take advantage of the vulnerable.  Being diagnosed with a chronic illness leaves most feeling vulnerable.  I stay away from anything claiming to "cure" the disease.  There is no cure, but there are legitimate medications.

From diets to vitamins, there is a lot of speculation over what will help MS.  It is unique for everyone, and I focus on the scientifically proven methods to treat the disease.  Those are the ones that have proven results and safety records in clinical trials.

Posted by admin on August 24, 2006 02:56 AM | Permalink

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It is so important to find a neurologist you trust.  That is the person who will provide you with all kinds of information - from test results and a diagnosis to therapy choices and advice on family decisions.  In my case, I found comfort in knowing I found someone who deals with this particular disease a lot and can provide me with the best treatment.

As much as you trust your doctor, it's prudent to get a second opinion.  There is no single definitive test for MS.  Usually, diagnosis comes after the analysis and interpretation of many test results (MRI(s), spinal tap, etc.).  Therefore, it doesn't hurt to have another interpretation of the results.

Posted by admin on August 24, 2006 02:55 AM | Permalink

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Learn as much as you can about MS.  Knowlege is power.  Ignorance is not bliss.  The more you know, the better decisions you can make.

The challenge here is to determine where to get your information.  As I've said before, stick to reliable sources.  If you have a good neurologist, he or she should be able to point you in the right direction.  The National Multiple Sclerosis Society website also has a lot of valuable information.

You should know enough to be able to ask good questions when you see your doctor.  You also want to be able to keep up-to-date on current research.

Posted by admin on August 24, 2006 02:55 AM | Permalink

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When I was first diagnosed, I looked all over the internet for information about multiple sclerosis.  I discovered that there were only a few sites with reliable information.  The rest were either attempting to sell the latest "cure" or talking about worst-case scenarios.  Based on what I found, I was destined to live in a wheelchair for the rest of my life.  The truth is, the stories that are news-worthy are the ones that are extreme.  In fact, there are a lot of people with multiple sclerosis (especially with today's drugs), that live normal lives.  I would have liked to have known that during my diagnosis.

I remember online chatting with a MS "support group" and hearing the horror stories from these people.  I was totally overwhelmed, and felt powerless and hopeless against this disease.

The National Multiple Sclerosis Society is the site I went to for a lot of information.  They have real support, facts and latest news links which I found very useful.  It was nice having a place I could go to where I knew the information was reliable.  This is a good place to start for the newly diagnosed.

Posted by admin on August 22, 2006 03:51 PM | Permalink

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