Know Multiple Sclerosis

Over the holidays, I see family and friends I haven't seen for a year and there's always the inevitable awkwardness where they are trying to ask me how I feel. Some of the phrasing includes:

"So, how are you feeling?"
"Is everything going OK?"
"You look great - are you doing all right?"
"What happened to all your hair?"

OK, I don't think the last one has to do with multiple sclerosis, but I do tend to blame my male pattern baldness on MS. As I've said before, what good is MS if I can't blame things on it?

I personally like getting these questions. It shows other people are thinking about me and that they care. I want to tell people how I'm doing, and to educate them about this disease. Every additional person that knows a personal MS story is one more person who might raise awareness for the cause.

I guess a lot of it depends on whether the person is close to me or not. If it were my boss, I would not be as thrilled.

I'm curious how other people feel when asked about MS.

Posted by admin on January 3, 2008 04:43 AM | Permalink

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Most people, including myself, do not particularly enjoy exercising. Once I get into a routine, it is fine, but initially it is just torture. I have found myself using the multiple sclerosis as an excuse not to exercise. I notice symptoms when I get too hot, so I play the MS card too often. I also figure - what else is the MS good for if I cannot use it as an excuse to get out of things I do not want to do?

My doctor says that I should absolutely be exercising. He suggested some ways to avoid the heat including exercising in the early morning, pointing a fan at myself, and swimming. He said even if I feel some symptoms during heat (which is normal with MS), that permanent damage is not being done. Those symptoms will go away after cooling down.

So here I go - I plan on starting to exercise some. Now I need to find some other things I do not want to do so I can play the MS card.

Posted by admin on December 1, 2007 03:27 PM | Permalink

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Some people with multiple sclerosis can't hide it - their symptoms don't allow it. Many MS patients, though, have a choice - they may have symptoms which are not apparent to others.

I've heard that for every person someone knows with MS, they probably know someone else who has it but just hasn't told them. That got me thinking....how many people do I know that have MS? Sure, I could count the ones that have revealed their MS to me. But what about the others? I don't know they have it, and they don't know I have it.

I wonder how many of my acquaintances have MS....

Posted by admin on October 19, 2007 01:54 PM | Permalink

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A lot has been written about diet and supplements and their effect on multiple sclerosis. When I was first diagnosed, I gave the Swank diet a try. It's a very low-fat diet that claims to have a positive impact on MS. There are testimonials about it all over the internet.

After some time, I found I missed eating some of the things missing from the diet - such as french fries and ice cream......so, I stopped it. I continue to eat a relatively low-fat diet - not necessarily because I think it will make a huge difference with the MS, but because it's good for overall health.

I try to remind people that "alternative" therapies like the Swank diet should be approached with caution. They are often unproven and there is absolutely no evidence they make a bit of difference with MS. You may find individual testimonials from people claiming they were cured - you will often find no proof, however.

All of this said, I think it's worth investigating all the options available to us as MS patients. Traditional therapies are far from perfect. There is yet to be a cure. I would just say use caution - there are a lot of people out there looking to take advantage of us.

Posted by admin on October 2, 2007 03:56 AM | Permalink

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Anyone notice symptoms getting worse or even a possible relapse when you catch a cold? Since multiple sclerosis is an autoimmune disease, it seems logical that a virus or infection that causes an immune reaction may result in noticeable MS symptoms. Not sure how much research has been done on this - just wondering...

I try to stay healthy (just like everyone else). I get a flu shot each year - cleared it with my neurologist first - and I'm a little obsessive abound hand-washing (not the crazy kind of obsessive, just a little....). I guess MS makes me a little paranoid.

Posted by admin on September 26, 2007 03:48 PM | Permalink

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We all have excuses. I know at the end of my life I will regret the things I did not have the courage to try - not those things which I tried, but failed. At least for the failures, I will know how it turned out. For all the others, I will just leave this world wondering.

Multiple sclerosis can provide anyone with plenty of excuses. It's an excuse not to exercise because of the heat. It's an excuse not to try something new because of the stress it would involve. It's an excuse to not live life to its full potential. That, to me, is the ultimate power of the disease.

It's important to identify those things which are in your control and those that are not. Much of this disease is out our control. It starts with being diagnosed and continues throughout our lives with various symptoms that appear. The good news is that there are things that are within our control: Taking care of one's self; Working with a neurologist; Finding treatment regimens which work, etc. Those are my focus.

I refuse to let this disease have any more power over me than possible. Yes, it dictates many of the decisions in my life. But I am still the "decider" as a not-so-wise man once said.

Posted by admin on September 25, 2007 02:30 AM | Permalink

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I'm always looking for positive things about multiple sclerosis. Here's another one: the name. Sounds like a trivial thing - and, maybe I'm reaching a little - but here goes...

There is something cool about having a name that so perfectly describes the disease. Multiple sclerosis means 'many scars' - which is exactly what is happening. The immune system mistakenly attacks the myelin sheath surrounding the nerves, thus resulting in plaques, or scars. Multiple sclerosis is a perfect name.

Then, there's the nickname: MS. Having a nickname is always nice. This one is mysterious. A lot of people probably confuse it with some other diseases (e.g., muscular dystrophy). I guarantee you that when you reveal to most people you have MS, they have no clue what you're talking about. Upon leaving the conversation with you, they run to the closest internet connection to find out exactly what this 'MS' is all about. You're an enigma - a mysterious one with a mysterious disease....pretty cool.

Finally, whether you call it multiple sclerosis or MS, it's still way better than the names of some other diseases. Just off the top of my head, gonorrhea would be one of them. That's one disease I wouldn't be revealing to anyone. OK, maybe not just because of the name - but it certainly doesn't help.

So be proud of your MS label - it could be worse...

Posted by admin on September 11, 2007 04:04 AM | Permalink

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I recently found a website which I think is EXACTLY what patients need. It's called PatientsLikeMe.com. You can find out more about its origins here (very inspiring story).

The site allows you to search for other patients based on specific criteria such as treatment information, symptoms, year of onset, etc. I find it very valuable.

My profile is here. I encourage folks to check it out.

Posted by admin on July 27, 2007 01:43 PM | Permalink

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I've mentioned before that, since developing this site, I've been telling more people that I have MS. I think of it as part of the whole raising awareness thing. Most reactions are normal. People ask the typical questions (see previous entry on this topic). But some reactions I feel the need to write about. Such a reaction happened last week.

I was telling an old friend about it at lunch. Somehow the health topic came up and I mentioned to him that I'd tell him something about myself. I could see the panic in his eyes already - not a good sign. Then, I dropped the bomb, "I have multiple sclerosis."

I wish I had a camera on his face because it was so over the top dramatic. Then, these five wise words spilled from his mouth - "Oh my God, that's horrible!" What a fantastic response! So there I was trying to reassure him that everything would be OK. After some calming words and a pat on the back, he walked away feeling better about things. I'm glad I could make all this easier for him....

Posted by admin on July 13, 2007 02:37 PM | Permalink

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I read an article yesterday which has been on my mind.  It covered the story of a woman who has Amyotrophic Lateral Sclerosis, also known as Lou Gherig's Disease.  This woman is 37 years old with children.  The average life expectancy after being diagnosed with ALS is 2-5 years.

I was struck by how young she is and by how strong she has handled everything.  She and her husband explain everything in an honest way to their children, and help them in preparing for her death.  I cannot imagine a more difficult task.

Knowing that MS is not fatal has always been a comfort to me.  While I do not know what the future holds (even those without a chronic illness don't hold crystal balls), I feel optimistic.  While MS certainly has the potential to impact quality of life, the fact that it is not fatal means that we all have the gift of time.  Time to enjoy today; time to plan for the future; time to benefit from current research.

Posted by admin on January 31, 2007 05:26 AM | Permalink

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Funny thing when you meet someone who has something in common with you.  You automatically connect.  We're always trying to find that common link between us.  It could be that you were born in the same town, you like the same band, you used to work at the same place - even that you have the same disease.  Whatever it is, it allows us to feel connected to the other person.

I've met quite a few people with multiple sclerosis.  And, I automatically feel like we have something very important in common.  We have shared some important experiences:  feeling the scary symptoms, going through the often difficult diagnosis, coming to grips with having a chronic illness, learning about the disease, examining treatment options, etc.  For those who have it, MS is a big part of their life.

At first, I didn't want to meet anyone with multiple sclerosis.  I thought it would be too hard and I was in denial about having the disease.  I didn't want to be part of that "scene" - as if it's a club of misfits.  I got over that line of thinking and accepted that I was part of that "scene."  Just like everyone else who has it, I neither chose nor should I be ashamed to be part of it.

Now, I enjoy meeting others with MS.  It's nice when I talk to someone with whom I have so much in common.

I think there should be a better way for all of us to connect.  I hope this website is a small step towards that goal.  The internet is a great tool for making connections - it is the best way to reach a very specific group of people who happen to be spread out all over the world.

Posted by admin on January 11, 2007 01:34 AM | Permalink

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Recently, I've been telling more people that I have multiple sclerosis.  I still am not really sure why...I guess after I did it a few times, it was easy.  I am very picky about whom I tell.  If it's someone at work, I make sure I trust them not to go tell everyone else.

The more people I have told, the more predictable their responses have become.  Of course, there are the standard:

• "Are you sure you have that and not something else?"
• "Do you have any bad symptoms?"
• "How has your family handled it?"
• "Is there medication for you?"
• "But you're not in a wheelchair...you look so good."
  

Recently, someone's first response was, "No, you don't; that only happens to women."  Awesome.

So, when he asked what kind of symptoms I have, I included in the list hallucinations and that I thought I might be turning into a woman..  I told him that, in fact, I thought I was having a hallucination right then.  He freaked out for a minute and then I stopped.  I really shouldn't make fun - if I didn't happen to have MS, I wouldn't know anything about it either.  I was just bored with the same explanations for all the same questions.

Posted by admin on January 1, 2007 03:35 PM | Permalink

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There are a lot of organizations which claim to support multiple sclerosis.  Some are legitimate, others are not.  I've worked with the National Multiple Sclerosis Society - they have a very good reputation.  My neurologist referred me to them when I asked how I could get involved.

Each organization has a different purpose.  Some contribute to research efforts; some are dedicated to supporting those with MS; some help to raise awareness.  Usually, they do a combination of these. 

Does anyone else have experience with other organizations which are reputable?  This is not meant to be an advertisement for those organizations - just an honest discussion about experiences with them.

Posted by admin on December 13, 2006 01:10 AM | Permalink

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I received a suggestion from a reader to try to get input into how people with multiple sclerosis manage their lifestyles.  There are all kinds of ways, from diet and holistic approaches to exercise routines and yoga.  I would really appreciate any comments you could provide.

For myself, I try to eat a sensible diet and keep my stress level as low as possible, although that can be difficult with a family and work.  In general, I think common sense and moderation are good guides.

Posted by admin on November 2, 2006 01:32 PM | Permalink

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When you have MS, it can be hard to distinguish between normal aches and pains that everyone feels and symptoms related to the multiple sclerosis.  Whenever I feel anything, the first thing that pops into my head is the MS.  It's not the right approach, but it's often what I do.  The longer I've had the disease, the more I've been able to resist that.  It's important to learn how to do that - otherwise, you can go crazy.

I have asked my doctor about various aches or pains, and he is able to tell me if it's probably related to the MS or not.  I've even searched the internet to see what could cause aches and pains - bad idea.  I recommend NEVER going out on the internet to try to diagnose yourself.  I'm no doctor but I've read a lot about MS, so I know just enough to be dangerous on the internet .

While I've been fortunate that MS has had little physical impact, it has had a profound impact on me mentally.  Since it's a chronic illness, knowing it will be there for the rest of my life is troubling.  Of course, there's always the hope that a cure will appear.  Fortunately, there are very good treatments available in the meantime, and I'm sure we will see even better treatments over time.  But, the most troubling thing about MS for me is that sometimes I feel like if I got this, I could get anything.  It made me realize, at a relatively young age, that health is not a guarantee and that anything can happen.  Of course, maybe that's something everyone should try to keep in mind - might make us all appreciate life a little more.

I'm still learning how to deal with the mental side of MS, but over the past eight years I've made good progress.

Posted by admin on October 26, 2006 01:30 PM | Permalink

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I've read a lot of these about MS.

Natural remedies are safer than traditional (scientifically proven) therapies.  These "natural" remedies are often unproven, so there is no data for their safey or effectiveness.

Diet has a direct impact on the disease.  While this may be true, it's unproven.  I think common sense should prevail and a balanced diet makes sense for anyone, regardless of whether or not they have MS.

MS is fatal.  It is not.  MS is a chronic disease, meaning it stays with someone for the rest of their life.  But life expectancy for someone with MS is very close to that of the general population.

MS means you shouldn't have children.  Every case is individual, and so a decision to have children should be made individually.  MS should be one factor in the decision, but not the only one.

I've even read that MS often happens to "good-looking" people.  Are you kidding me?  I'm curious - how do you measure this?  Is there a scale?  Is there a panel to judge?  Absurd.

MS will lead to a wheelchair.  Most people with MS do not need a wheelchair.

I think that keeping in mind that multiple sclerosis affects everyone individually disproves most myths.  I've said it before, but learn as much as you can so that when you read things like this, or when someone is trying to sell you something, you know what is the truth.

Posted by admin on October 20, 2006 01:11 AM | Permalink

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I find it funny how blind people can be to their own selfishness.  Selfishness is not always bad; in fact, it is at the core of our existence.  Most kind acts have some kind of selfish intentions behind them.  For some, they believe if they do good deeds they will have a better chance of going to heaven, whatever heaven is for them.  While they may be helping someone else, the initial reason for doing the good deed is to try to get to heaven - selfish.  Sure, there are some selfless, kind acts in this world.  I'm just saying that if you take a look at people's true intentions, a lot of times those intentions are to help themselves.

Would I have participated in MS Walks and try to raise awareness for the cause if i didn't have the disease?  No.  First, I wouldn't be as aware of it, just like I'm now not as aware of all the other diseases which I don't have.  But, more remarkable than that, even if I knew everything I do now about MS, I would not be as motivated to help the cause if I wasn't personally affected.  I do the things I do for MS because I want to help myself.  Sure, I'll be happy that others with MS also benefit.  And the more I learn about MS and the more people I know with the disease, the more I see that benefit.  But, the initial reason I got involved with helping to raise money and awareness for multiple sclerosis is selfish.

I don't see anything wrong with that.  It's natural to look out for one's own interest and it's honest to admit it.

Posted by admin on October 13, 2006 04:53 AM | Permalink

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One of the challenges with multiple sclerosis is dealing with the constant reminders it provides.  I was once asked if I think about MS every day.  Of course I think about it every day.  There are always reminders in the form of symptoms, worries, injections to take, etc.  Regardless of symptoms, I would guess that anyone diagnosed with multiple sclerosis thinks about it at least once a day.  That's probably a good thing.

I think of the reminders as nature's way of telling me that there is something not quite right and that I should acknowledge it.  I'm not talking about obsessing over things I cannot control; rather, keeping in mind that I do have this disease and that I should be aware of the things that are in my control.

While the reminders are worrisome sometimes, their purpose is also positive.  They help me to remember to take my medication; to get enough sleep; to try to eat right (sometimes).  I don't want to forget about the MS.  It's there and influences my decisions.  It does NOT control me, however.  I'm hoping the reminders will help keep it that way.

Posted by admin on October 6, 2006 01:18 AM | Permalink

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The rule I follow when determining who to tell is asking myself, "Who needs to know?"  My family and friends were first, of course.  I told a close co-worker whom I trusted.  That was all.  Since symptoms were under control, I saw no need to tell my employer.  In fact, I plan to keep this to my family and friends unless a time comes where I need to disclose it (i.e., interferes with work).

As much as we like to think we're open-minded, the truth is there is a certain stigma associated with any kind of disease.  Consider this:  If someone were to approach you two years before you had any MS symptoms and said they have, for example, lupus.  What would your reaction be...honestly?  You probably would not discriminate or judge them (hopefully:)); but, chances are when you saw that person, you would associate the disease with them.  I don't want that association between me and MS.

In general, I don't want to be treated any differently.  So, I don't advertise it.

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

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