So is anyone still reading this site? If so, what do you find to be the most useful? I'm thinking about changing the site into purely user-generated content, meaning all of you would provide the articles and comments and I would moderate and throw in stories as well.

Thoughts?

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?

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.

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.

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.

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.

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.

The drug is believed to improve walking in patients with multiple sclerosis. There is not evidence that it will have any effect on the overall prognosis of the disease - i.e, delaying disability. To me, this would be categorized as a symptom management treatment, which is much less exciting than some other areas of research. Still, for all those who have difficulty walking, having another option to help is huge.

It could be another product in our arsenal of drugs to treat this disease. Hopefully, trials will continue to go well.

There was news that genetic variations have been identified as a possible reason for the interferon drugs behaving so differently for different people. I've touched on this before. I think this will lead to a more customized approach to MS treatments. It could even be that MS is actually a superset of diseases that we conveniently combine into one simply because we don't understand it well enough. The response to the drugs varies so greatly in individuals - we need to find the explanation and this genetic research is a step in that direction.

Then, I read a quote that Montel Williams claims if 'he can do it, anyone can.' I think he was referring to his pain management regimen. Once again, give me a break. How can he pretend for one minute to know how anyone else feels or will respond to treatments? MS affects everyone differently, so if he can do it, that's great news for him only. In all fairness, he has raised a lot of money and awareness for the cause. I just get the sense it's self-serving at times.

I'm glad the MS news drought is over - looking forward to more.

Tysabri and Avonex are both treatments for multiple sclerosis. Tysabri had some safety concerns initially (see previous post), but the safety data has been very encouraging over the last couple of years. The company states that over 17,000 people take the drug in the U.S. and Europe, and 1,000 of those in clinical trials.

This is very good news for MS patients. First, it's another treatment from which to choose. Also, doctors are more willing to prescribe it now because of the recent safety data. And, it's another example of a profitable drug for MS which means more drug companies will pour money into the research and development of potential new treatments for this disease. All together, a big win for us all.

"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.

Only 15 patients were in the study, but nine of them had a 25% reduction in brain tissue damage according to MRI results. Disability had improved as well. Doxycycline is part of the tetracycline class of antibiotics which are believed to block an enzyme responsible for nerve damage.

While this is a small study and much research needs to be done, I believe this is very encouraging. We have several experts in this KnowMS.com community on antibiotics and MS, so I encourage people to write comments if they have questions.

Here's the full article.
And here's Alison's Minocycline category for more info about antibiotics and MS.

Clay is a great example of a celebrity with MS who is truly making a difference (and sheds a positive light on the disease, unlike some others....). I encourage people to check it out.

Recently, he was in Savannah, Georgia and had a disagreement with some reporters. According to reports, later at a hotel, Montel approached some of the reporters including a high school intern. A witness described the conversation as Montel saying, 'Don't look at me like that. Do you know who I am? I'm a big star, and I can look you up, find where you live and blow you up.' Williams later apologized. Very nice.

See what I mean when I say we need better celebrities with multiple sclerosis? Hopefully I don't get blown up for saying that.

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.