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Clinical Trials

A list of multiple sclerosis clinical trials provided by the U.S. National Institutes of Health.

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Acorda Drug Results

The company Acorda recently announced some safety results from its big drug, Fampridine-SR. The study tested patients' heart rythymns when taking the drug. The results were good and shares of the company soared.

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.


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The Drought is Over

Man, there has been a shortage in news about multiple sclerosis lately. This week there's been more.

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.


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A Good Celebrity

The National Multiple Sclerosis Society sent me an email announcing that country music star Clay Walker will be part of a live webcast on December 12. For more info, go here.

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.


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Oh, Montel.....

Many of you know Montel Williams, the daytime talk show host who was diagnosed with multiple sclerosis several years ago. Since then, he has become a "patient advocate."

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.


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Ghhha! I'm sure someone will blame this on MS messing up his mind. Then all ppl with MS will be considered 'unstable'. Again, GHHHAAA!

An End to the Stem Cell Debate?

There has been a lot of press in the last couple of weeks about the stem cells created from human skin. Some have suggested it could help to end the debate on embryonic stem cell research. Here's why it won't.

It's true this is a very promising area of research. It would, of course, be preferable to use these skin cells rather than embryonic cells. Much research remains to be done on both fronts, however, before scientists can determine the potential benefits of each one. Until that time, both fronts should be pursued. What if we were just to proceed down one path or another for ten years only to find out that it didn't work? That would be tragic and, more importantly for those of us who could be directly impacted, unforgivable.

This is a politically charged issue in the United States. President Bush, with his veto several years ago, has proven that a President does indeed have the power to stymie this research. The religious movement to prevent embryonic stem cell research competes with scientists' attempt to unlock its potential promise. As I've said in previous entries, I say give science a chance. It will give the gift of hope to anyone with multiple sclerosis.


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The Health Revolution is Coming

There are a lot of companies going after healthcare on the web. WebMD, Revolution Health, and Patients Like Me have all had some success. But there's rumors some bigger players, such as Google and Microsoft, will be making an appearance in this space.

It's more than just providing information. The movement will be towards a very coordinated way of handling healthcare. A place where patients, doctors, pharmacies and a community come together to share information. I think this will be a fantastic win for patients everywhere. Imagine, upon being diagnosed with multiple sclerosis, having one place to go where anything you need to know about your disease is available.

Some people raise privacy concerns. After all, in order to provide customized information, patients will have to give information to the sites. While this is true, I'm confident these companies can assure patients that their information will indeed be private.

This is a very exciting time. The more information which patients can access, the better decisions they can make. These sites will aim to do just that.


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good news for humans; great news for mice

Mayo clinic researchers were recently able to re-grow myelin in mice using a human antibody. With MS in humans, the myelin (protective coating surround the nerve cells) is destroyed faster than the body is able to regenerate it. This line of research is important in that, while it may not address the underlying cause of the disease, it might result in fewer symptoms and less progression in patients.

I'm very optimistic when I read this kind of research. I really feel like we're on the verge of some very exciting breakthroughs in MS research. With continued focus and determination, I'm confident we'll see an end to the devastating effects of multiple sclerosis in my lifetime. For more on this particular research study, see this article. Humans with MS should be excited. Mice with MS should be ecstatic.


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Lightin' It Up

I have smoked at various times in my life - no, not crack - mostly just tobacco. Never regularly, but I've gone through phases where I've done it. In addition to all the other reasons to quit smoking, there has been some research over the last few years which has linked smoking to progression in multiple sclerosis. Here's an article on one of the studies. And, just to make things confusing, there was some research very recently which says smoking has no effect on the progression on MS - see article here.

After being diagnosed with MS, I would notice that my vision would temporarily become blurred when I smoked. I figured this wasn't a good sign, but chose to ignore it. I continued to smoke occasionally until I started reading the research linking MS progression with it. Now, of course, I don't smoke. I don't know which research to believe, but I strongly believe smoking won't help the MS or any other part of my overall health.

Smoking has absolutely no beneficial value - it is the most preventable health risk out there. A doctor once told me that even when you live the healthiest lifestyle possible; when you smoke, you negate all of it and then some.

Of course, this is all referring to tobacco smoking. Now, marijuana, that's a whole other topic I'll write about later.....


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Hi, Unfortunately I do smoke, but that's not why I'm here. I've just been diagnosed with MS and am supposed to start tx with Avonex, of which, thank God, my insurance covers at a good rate. I was wondering if anyone knows much about it in comparison with other treatments. Do you know where to look?

I have actually been on Avonex for 8 years. It's a once-a-week injection of Interferon beta-1a. I have had success with it - no progression and no new lesions in MRI results.

Results are different for everyone. Here is some more info on my experience with Avonex. Please let me know if you have other questions.

Here's some general info on the first-line treatments:
A - Avonex, a once-a-week injection of interferon beta-1a.
B - Betaseron, an injection of interferon beta-1b. This is administered between three and four times per week.
C - Copaxone, a daily injection of glatiramer acetate.
R - Rebif, an injection of interferon beta-1a given three times a week. A higher dose of the medication.

I would get as much info as you can from your neurologist. Best of luck.

Smoking Has No Effect On Progression Of Multiple Sclerosis

http://tinyurl.com/yt3yu9


from medicalnewstoday.com

There's conflicting reports. I'm not sure smoking does impact MS progression, but it certainly can't help and previous studies have shown a relationship.

You may very well be right, but I just found the article adn thought i would post all of the "FACTS" that researchers keep handing out.

Kids with MS

I read this article recently about kids with multiple sclerosis. I didn't realize children could develop the disease. The University of California San Francisco has a well-known multiple sclerosis center which has been studying children with the disease. It's thought that there are probably many cases of this, but most go undetected as they are dismissed by the parents or doctors who don't consider MS to be a childhood disease.

I would imagine their youth would be an asset, as young people tend to recover more quickly and are generally more healthy than adults. Of course, that would be balanced with the fact that they developed the disease very early in life, so they have many more years to deal with the disease.

In the article, a 12 year old girl mentions how she's getting used to the medication even though it hurts. For all those out there afraid to start treatment because of needles: Look at this brave little girl who's taking her shots and, in doing so, some control over her life. She's an inspiration.

Here's some more information about pediatric MS from the National Multiple Sclerosis Society.


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Comments

I was diagnosed in 2000 when I was just 13. I had Optic Neuritis when I was just 8. Ever since the ON I suffered different symptoms with MS and no one knew what was wrong with me. I was so sick of doctor after doctor listen to my symptoms and say, "I've never seen this before." It was frustrating to say the least. It was such a relief to finally have a dianosis and understand that someone knew what my symptoms were. I'm now a 20 year old junior in college, right now I'm working full time. I have relapsing-remitting MS and I struggle with it everyday, but it's just another trial. I've been on Avonex since I was dianosed and I am so grateful for the good health I've had these years and all that I've been able to acomplish. I also have an identical twin sister who suffers from the same type of MS, so at least I have someone close to me all the time who really understands my symptoms as well.

Clay Walker's new album

Clay Walker is a country singer who was diagnosed with relapsing-remitting multiple sclerosis 10 years ago. Having gone to high school and college in Texas, I knew country music and was a fan of his. When he announced he had the disease, I knew nothing about it but I figured it was essentially a death sentence.

Now, 10 years later, Clay Walker is still performing and has done very well with Copaxone, one of the "ABCR" drugs for multiple sclerosis. These drugs are disease-modifying; that is, rather than treating only symptoms, they have an effect on the disease itself. And, as it turns out, I know a little more about MS now than I did 10 years ago, so I know it's not a death sentence and that many live normal lives with this chronic illness. I still enjoy reading articles about Clay Walker because he is a great example of someone who has done well with MS.

I saw an article recently announcing he'll be releasing a new album later this year. The reason I mention it is because this kind of publicity increases articles about him (and therefore MS), and thus raises awareness about the disease.

Walker also has set up the BandAgainstMS foundation to raise money for multiple sclerosis. He is a great example of a celebrity who is making a difference.


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Hormones please

Recent research shows that a hormone produced during pregnancy helps to calm multiple sclerosis.  It's been known for some time that the relapse rate drops considerably during a woman's pregnancy, and now researchers know a little more about why that is true.

I wonder if it will come to the point where these hormones are offered as a therapy.  I mean, I'm not exactly a macho guy now.  When I learned that MS affects nearly twice as many women as men, my wife was quick to point out my feminine side as the explanation for me having it.  I'm not sure if female hormones would be the best thing for me.

Anyway, I'm glad to see this research may prove to be promising.  Another step towards understanding multiple sclerosis. 


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An Inspiring Story

Randy Gollay sent me this great article to post on this site.  Thanks to Randy for sharing it.

February 14, 2007
BY RANDY GOLLAY Sun-Times Love Correspondent (Today Only)
Earlier this month, the Sun-Times asked readers to send in their best real-life love stories in which ordinary couples face extraordinary challenges and overcome them to live happily ever after. Buffalo Grove residents Randy and Bridget Gollay are that couple. Married for nearly 23 years, they've been through the mill and survived to tell their tale.

This is their story, as told primarily by Randy to Sun-Times staff reporter Mike Thomas.
 
They've endured her MS, his cancer, their trouble starting a family -- but if they had to, Randy and Bridget Gollay (pictured with their daughter, Mandy, 9) would do it all over again.
(Richard A. Chapman/Sun-Times)

Do you believe in miracles?
We met in 1980 at a company we both worked for called Door-O-Matic in Harwood Heights. I was a 28-year-old production scheduler and Bridget, then 20, was the plant manager's secretary. It was love at first sight.

We had little rituals where every morning we'd go into the stockroom and embrace. One time we got caught by the owner. He was more embarrassed than we were. (Bridget: It was just a kiss. Nothing bad.) But we had lots of allies there, people who looked out for us, so instead of going into the stockroom, we'd go into the women's washroom.

Still, we broke up a lot. There were three times we had to start all over again. I had to practically beg her. She just wouldn't get out of my heart. And I used to do some crazy things. One time I recruited some other employees to put crumpled-up newspapers in her car -- so many that she couldn't get in. That didn't go over well with her boss. (Bridget: He's a nut.) You gotta go for the gusto, right?

And we had heart-to-heart talks. (Bridget: Oh, and he would write me love notes.) She still has some of them. (Bridget: I have all of them. He would walk by and hand them to me, or leave them on my desk.) You've got to know where your priorities are. Eventually, though, the plant manager said, "One of you has to go." We decided it would be Bridget. (Bridget: No, he wanted me to go.)

I'm Jewish and Bridget was raised Roman Catholic, so our parents were kind of shocked when I made my marriage intentions known. But they ultimately gave their blessings, and I proposed on her birthday, Dec. 22, 1983. My father -- whose death earlier that summer following a car accident sent me into a deep funk -- wasn't around to attend. Before he died, we talked and I told him I wished I was half the man he was. He whispered back -- you could hardly hear it -- that I already was.

'Why do I have MS?'
Bridget and I wed on Sept. 16, 1984. It was a traditional Jewish ceremony with lots of dancing and drinking and family-style eating (Bridget is Sicilian-American) followed by a honeymoon in Kauai and Maui.
Three dreamlike years passed, and then it happened. Bridget was diagnosed with the relapse-and-remission form of multiple sclerosis. She kept losing her balance and fell down a flight of steps. When the doctors told me what MS was, I didn't want to believe it. I couldn't believe it. Until you experience it, there's no way you can even comprehend it. (Bridget: I felt like, "God, what did I do? Why do I have MS? I don't want it." Thank God I married someone who's understanding. I told him, "If you feel like you have to leave me, go ahead." And he goes, "No. Till death do us part." I knew he wouldn't do it, but I just had to be sure.)

That's a ridiculous statement to me. It went in one ear and out the other. I don't need to hear something like that. I'm not that type of person. We know a lot of people through an MS support group we once went to whose marriages just dissolved. They couldn't handle it. There's a lot of pressures. Your life just takes a 180. And we didn't know what to expect. At the time we thought maybe Bridget would use a cane. She went from a cane to a walker to a wheelchair to an electric wheelchair. Her legs were always affected, but now her hand is too. (Bridget: In the beginning it was really hard. But you kind of get used to it. Try to, at least.)

My wife, she's a rock. I don't know how I would be able to deal with it, but she does. Her strength is why our daughter Mandy is such a nice, loving person.

Surgery, fertility treatment
Parenthood, by the way, almost didn't happen. When I envisioned my life, I didn't see myself adopting. I was going to be a father the traditional way. Unfortunately, when we started trying in the early '90s, there were fertility complications on both ends. I had three unsuccessful surgeries while Bridget endured numerous fertility injections, took medications and had countless ultrasounds. We even tried in vitro fertilization, each time with negative results. After a doctor told me I'd never have kids, I actually punched a brick wall in frustration, breaking my hand. The whole painful process was a drain on our time, our nerves and our financial resources. We're still in financial ruins.

But we don't give up easily and decided adoption was the next step. When newspaper ads yielded no responses and even DCFS turned us down, I contacted a couple of prominent Chicago adoption lawyers. As both of them were jailed for deceiving their clients, that didn't really work out. We next tried international adoption, appealing to Illinois Gov. Jim Edgar. He responded to a letter I wrote, set us up with reputable agency and the intense process began.

After three long and sometimes spiritually crushing years, mounds of paperwork, lie detector tests, fingerprinting, home studies and going through every last cent we had and then some, it finally happened. China granted us special permission to visit the country and possibly adopt an orphan. Because of my wife's condition, however, she couldn't go. So I went solo. As far as I know, that typically isn't allowed.

The gift of Mandy
There was red tape at every turn and the regulations were extremely, sometimes absurdly, rigid. This wasn't cheap, either. The adoption alone cost $25,000. Somehow, though, things worked out. Several weeks later I returned home with a beautiful 10-month-old daughter. She's all we could ask for and then some. Odd as it sounds, we needed everything that did occur in our lives to occur for Mandy to happen.
That includes this: Around the time we started making headway on the adoption front, I noticed a rash on my hand. I'm a man, so I didn't think anything of it. "I'm not going to go to the doctor," I thought. "It'll go away." Well, it didn't, and Bridget made me go. So the doctor did a biopsy and determined it was a certain kind of lymphoma. I read in a medical journal that I had up to five years to live. Bridget was probably in shock. I remember when we were in the thick of dealing with it, she completely lost it. She was like a zombie, crying all the time. And I had to realistically look at the prospect that my life was over. What's going to happen? We'd climbed over all these hurdles and then all of a sudden we're just stopped right in the middle of the road. (Bridget: It was bad.)

'The lymphoma went away'
The first doctor wanted me to see another specialist, who did another biopsy that determined it was yet another form of lymphoma. Eventually, I saw Dr. Steve Rosen at Northwestern. They did a biopsy there and came up with another decision. In the Jewish faith, the number 18 means life. And for whatever reason, my oncologist at Lutheran General had me do 18 radiation treatments. The lymphoma went away. The hospitals want to do research on me to understand how I survived.
Do you believe in serendipity? Believe it, because things happen for a reason. After all we've been through, Bridget and I are inseparable as always, we're a team and we're best friends. I've won the love lottery. All the money in the world is no match for what we have. Somehow we just reinvented ourselves. We found the strength to be persistent and achieve our goals.

And if we had to do it all over again, we would.


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The latest on 'benign' MS

There was a study recently which followed a group of people with 'benign' MS.  This means that multiple sclerosis is present, but there are few or no relapses and disability after a significant period of time.  I guess it could be described as the 'best' kind of MS.

The latest study found that, often times, benign MS at 10 years can turn into a more progressive form at 20 years.   And there were no clear characteristics which helped to determine the prognosis.  The study also pointed to the fact that MRI lesions, while helpful, are probably only part of the picture.  The theory is that, even in what appears to be normal brain tissue in an MRI, damaging activity can be occurring.

I'm assuming no one in the study was on one of the disease-modifying drugs (ABCR), since they were all thought to have had benign MS.  A watch and see approach is often followed in these cases.  The problem is we can observe symptoms and MRI results, but there could be hidden damage occurring which, over the course of time, can result in more disability.

I have relapsing-remitting multiple sclerosis.  I take an agressive approach to it in taking an interferon treatment.  I also ensure I follow my neurologist's advice and get regular MRIs and exams.  It's important to identify what is in my control and what is not.  That way, I can spend my time, energy, (and yes) worry on productive things I can do to help myself.


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Taking in the News

As you can see by the column on the right side of this page, news about MS comes in every day.  I find the medical news alerts to be the most useful.  When I try to go out on the web and find news on my own, I usually find articles of no interest to me.  Examples of these would be anything announcing an MS event occurring this weekend in Nebraska.  I live in California - that does me no good.

The internet gives us so much information it can be difficult to filter the good stuff from the, <eh-hem> not good stuff.  So finding a feed like the one on this site which specializes in an area is helpful.  This particular feed is for multiple sclerosis-related medical news only.

Another consideration with finding news about multiple sclerosis is learning how to deal with all the information.  An example is an article I recently read which announced the results of a study that found fathers were more likely to have children who develop MS than mothers.  Being a father, I found this very disturbing.  But I also realized that there's a lot of reason for hope, and that this particular study is just another stride in trying to understand the disease.  My point is that some of the information you see in these articles is troubling, but I would rather know than not know.  And every piece of information we get brings us closer to understanding MS.

I find it necessary to learn as much as I can about the disease, even if some of the things I discover are scary.  The more knowledge I arm myself with, the better decisions I can make. 


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Comments

I saw that article too and was a bit ... disturbed by it. Perhapse I was being over sensitive, but I get that way when bad news involves my children.