Know Multiple Sclerosis

With job changes come insurance changes as well. It's important to know your rights and the rules of the game. A lapse in insurance can be catastrophic for someone with a disease like multiple sclerosis.

With many treatments costing upwards of $10,000/year, insurance is a must for most of us. The way I understand it, in order to wave the pre-existing condition clause when signing up for new insurance, you must be able to prove that you have had continuous coverage over some period of time. If there is a lapse, then there is a lengthy waiting period before a new carrier has to cover treatment for your condition.

There are all kinds of crazy rules. I actually encourage people to go see "Sicko" by Michael Moore. Yes, it's extreme - but it opens your eyes to the dangerous parts of our healthcare system. And fear can be a good motivator to learn. I try to know as much as I can so that I can make informed decisions.

Anyone else have insurance stories/advice they want to share?

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Posted by: mdmhvonpa at March 25, 2008 06:47 PM

Posted by: Jeanette at March 29, 2008 02:55 PM

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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.

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Posted by: Anne at March 20, 2008 04:59 PM

Posted by: Kim at March 27, 2008 11:53 PM

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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.

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Posted by: Anne at March 7, 2008 05:56 PM

Posted by: fern at March 13, 2008 11:20 AM

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We have yet another chapter in the Tysabri story. Biogen Idec, the manufacturer, is now being required to put labels indicating that the drug could cause liver damage.

Quick history of the drug: Tysabri was initially touted as a huge breakthrough for multiple sclerosis patients several years ago. Shortly afterwards, it was pulled off the market after it was believed to have caused potentially deadly infections in three patients. Then, it was put back on the market with more warnings. Now, it has even more warnings.

It's typically seen as a second line of treatment - one to go to if other options have failed. I can see why.

For a first-hand perspective, here's one of our own reader's personal experience with the drug.

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I was listening to the news yesterday and heard a story about a man with multiple sclerosis who had received adult stem cell treatment. Researchers used the man's own stem cells. Results were very good and the research will be continued.

There's a big debate over whether to use adult or embryonic stem cells for this type of research. I have said many times in the blog before that I think we should pursue both. Only then will we know for sure which one is better for MS.

I'm really happy to see that the adult stem cells worked in this man. Of course, much research remains to be done before any treatment like this available for the public. But, it's another reason for hope.

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Sorry there hasn't been much to read here lately. I've been very busy with work and home and so haven't had much time. That said, I will try to be more active with this blog.

Here's an article I read recently about some promising new treatments for multiple sclerosis. The most interesting part to me is the fact that they used autopsied human subjects to perform some of the research. They used six from MS patients, and two healthy subjects to study the protein differences between the two.

This is amazing. What better gift to leave the world than to donate your body to this kind of research? Especially if you have something unique like multiple sclerosis. I know it's not for everyone, but for me, there's no doubt in my mind that my body would be put to better use in research than in the ground.

I know - a little morbid and dark - but just think about all the people who could potentially benefit from these six former people who left their bodies to researchers.

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