Multiple Sclerosis

One small study has demonstrated that people in the very early stages of multiple sclerosis (MS) have much lower muscle endurance than people without MS, which may affect their gait.

Comparing a group of 52 people with early MS to 28 healthy volunteers, the researchers found that people with MS had 40 percent less muscle endurance than those without MS.

In addition, the people with MS had specific gait abnormalities, including:

• walking with a wider base (legs farther apart) for stability
• walked more slowly
• walked in an asymmetrical pattern
• took shorter steps

The researchers do say that early intervention with physical therapy and exercise can help our endurance and potentially cut back on some of the fatigue that we deal with.

I don't know if I have low muscle endurance or abnormal gait. Maybe I do, but it's normal for me and I'm just used to it.

What about you? Have you ever had your gait formally assessed? Do you feel like your muscle endurance is low? Please leave your comments below.

Although the scientific community has known that testing for antibodies for the JC virus can give us information that will help determine our risk for PML if we take Tysabri, no test was commercially available. Now, Quest Diagnostics has developed STRATIFY JCV, a blood test for anti-JC virus antibodies. So, why should we get this test if we are on Tysabri or considering taking it?

Here is the bottom line - if you test positive for the anti-JC virus antibodies, your risk of PML is higher than if you test negative. Here's how it breaks down:

• If you test negative for anti-JCV antibodies, your risk of PML on Tysabri is less than 1/10,000.
• If you test positive for the antibodies, have no other risk factors (been on Tysabri less than 2 years and no prior immunosuppressant use), your risk of PML is less than 1/1000.
• If you have been on Tysabri more than 2 years and were on a immunosuppressant (such as mitoxantrone, azathioprine, methotrexate, cyclophosphamide, mycophenolate mofetil), your risk is about 1.1% (or 11/1000).

It is up to you and your doctor what to do with the information that you get from the STRATIFY JCV test. While PML is rare (even in people with a positive antibody test), it is also devastating. All factors should be weighed and this test will give people more information to guide their decisions.

<p>Read the full blog on the STRATIFY JCV test and what it can mean to people on Tysabri or thinking of starting it (I wrote this one for the National MS Society): FDA updates Tysabri label to include testing for PML risk

People with MS have enough pain and anxiety from this disease and its symptoms without needing an extra dose of terror thrown in every time we have to inject ourselves.

If you find yourself starting to dread your injection hours before it is going to happen, it is time to take action and try and lessen its power to terrify you.

I can't promise that the advice or tips in this article will make injecting pleasant for you, but they do work for some people. Give it a try and see if you can minimize your distress around self-injecting.

<p>Read the full article: Tips on Self-Injecting MS Medications for Needle Phobes

Many of us want to do way more than we can, as we are limited by our multiple sclerosis symptoms. This often leads to guilt - the idea that we should be better, we should be able to finish things, we should not have to ask for help.

I'm trying to work on this myself. The naps that I have to take in the afternoon are not as nice if I feel guilty about them. My husband is probably sick of me saying that I am sorry all the time for not being able to make a nice meal. I'm tired of thinking about how I should be better at stuff.

Join me in banishing any MS guilt that you might be feeling. I've written an article about some of the things that I trying to stop having negative feelings about myself. Read the full article here: Do you have MS guilt?

What about you? Can you identify with the feelings of guilt around having diminished ability to "do it all?" What do you do about these feelings? Share your stories, feelings and tips in the comment section below.

I feel a little guilty. I have posted a couple of times about dogs and how they can be wonderful for people with MS, both as service animals and as loving companions. However, I realize that many of you have cats that make your life a little more wonderful.

Although I have not owned a cat in a long time, I do remember the comfort that a purring cat could bring to me when I was under stress or sad. When I had bouts of insomnia, having a cat snuggled up next to me would work wonders in helping me "let go" of worrisome thoughts, allowing me to drift off to sleep.

I have also noticed that cats tend to come into people's lives in unusual ways, sometimes just when they are needed to fill a gap or bring some happiness.

What about you? Do you have a cat that lifts your spirits? Does your cat make you forget about your symptoms (or make you feel them a little less) sometimes? How did you get your cat? Tell us about your cat in the comment section below.

In my latest post, Are You a Vegetarian with Multiple Sclerosis?, I discussed wanting to eat less meat overall, but being restricted by the guidelines of the Best Bet Diet.

Writing this post reminded me that vegetarians, especially vegans, often need to take supplements of vitamin B12. Studies have shown that people with MS have a higher rate of vitamin B12 deficiency than the general population, probably due to a problem with binding and transport of this vitamin.

Logic would tell us that if someone is both living with MS and restricting foods containing B-12 (primarily eggs, seafood and meat), that their chances of being deficient in vitamin B12 would have to be pretty good, or at least much higher than most other people.

If you are a person with MS who is also a vegetarian/vegan, consider getting your vitamin B12 levels checked. The symptoms of vitamin B12 deficiency include fatigue, headache, and memory loss. We all have our share of MS symptoms, many of which are the same as those of B12 deficiency. Wouldn't it be great to find out that a little vitamin pill could make us feel even a little better?

It should also be noted that Solu-Medrol can lower vitamin B12 levels, so it might be worth getting levels checked if you were just treated for a relapse, as well.

Have you ever had your vitamin B12 levels checked? What led you to do this? What were the results? Do any of you take a regular vitamin B12 supplement? Share your experiences and tips in the comments section below.

Read the full article: Vitamin B12 and Multiple Sclerosis

I have increasingly cut back on the amount of meat that I eat. This is for several reasons, but mostly because I prefer to cook vegetarian meals. I would really prefer to become a vegan, as I just gravitate towards that type of food.

However, I am also trying out an eating plan that is pretty close to the Best Bet Diet. This diet basically has you eliminating:

• Dairy
• Gluten
• Legumes
• Refined sugar
• Yeast

I actually have been able to do this pretty successfully. Yes, food choices are restricted, but there is some pretty delicious and healthy food that doesn't contain any of the non-allowable ingredients.

However, when you eliminate meat, poultry and fish from this kind of diet, you are pretty strapped for sources of protein. When I was an ovo-lacto vegetarian, I relied pretty heavily on eggs and dairy to fill in for the meat. When I was a vegan, it was beans and tofu, both of which are not allowable on the Best Bet Diet, as they are legumes. Peanut butter is out, too.

So, I was wondering how others may handle this. I do understand that it might not be possible to embrace vegetarianism at this point in my life, as long as I am following the Best Bet Diet. I think this diet is helping my symptoms - at least, I know I feel worse when I consume some of the things on the list. So, I can go ahead and keep eating meat and fish without too being too bothered by it. I also supplement with a rice protein powder in my smoothies, so I am already getting some protein there.

However, I did think that maybe someone out there had the answer or at least some suggestions for someone following the Best Bet Diet (or the MS Recovery Diet) who would like to eat less meat. Please, share your experiences and advice in the comment section below.

I think, with very few exceptions, those of us living with multiple sclerosis can always benefit from learning more about our disease. Whenever I have thought that I am pretty knowledgeable about MS and that my learning is done for awhile, I have been humbled by a piece of new information that I have stumbled upon that has made me realize that the amount that I understand is but a tiny percentage of the gigantic body of knowledge that exists about MS. Furthermore, information about MS is a moving target - there are few absolute "knowns" about this disease.

For these reasons, I was pretty excited to be introduced to MS Atrium at the ECTRIMS conference in October. This new web-based source of information about MS is presented in a unique and effective way - the user chooses a subject area such as "Science of MS" or "Evolutions in Care" and is then offered selections of presentations with such titles as "What is the financial burden of MS?" or "Is 'benign MS' truly benign?"

I had the opportunity to speak with one of the creators of the project, Dr. Stephen Krieger, who told me that the site was designed for doctors and people with MS, but there was no limitation on viewing the topics - people with MS could look at the materials for doctors (and docs were certainly welcome to visit the "Patient Resources" room, if they were so inclined). I'll put it out there right now - this is a project of Genzyme. However, nowhere on the site did I see anything that skewed any of the information toward any drug or product (besides the Genzyme logo in the top right corner).

So what is there for people with MS? Well, at this point, the "Patient Resources" room is still being built and just contains links to other sites, but this is supposed to be filled with all sorts of information in the near future. However, what excited me the most were the topics in the "Evolutions in Care" room. I am pretty sure many of you could find a topic or two here that is interesting to check out, with more on the way.

There is also a feature called "MS Alerts," that allows you to receive news on MS compiled from several different sources. You can even customize it to include exactly the news feeds that you want. Go to the "Community Commitment" room and click on the "Access the App" icon - once you are in that screen, clicking on the question mark will tell you how to use this feature.

I'd love for you to visit the site and give feedback. It is new and does have some bugs to be worked out and lots more information needs to be added. This is where we can help by offering suggestions, telling the creators what works well for you and what is frustrating, saying what you'd like to see more of. When I met Dr. Krieger, he was very sincere about making the MS Atrium a resource that people would want to use. Again, I have really tried to find the "catch" where I can see that Genzyme is using this to lure docs and/or people with MS into the site in order to sell them something, but I can't find anything sketchy. This is not a drug marketing tool, but an attempt to educate people about MS. Take a look and see what you think. Share your opinion in the comments section below.

This is not an article about a new medication on the market or urging you to try hyperbaric oxygen therapy. Although I wish I had a magic pill or treatment that could fix some of your symptoms, I don't have that kind of answer that will help everybody.

What I do have are some tips that have helped me deal with this horrible disease - these are some things that I have done to help me through the times when I felt the very worst and I was convinced that I would feel that way forever. These are ways to think about your MS or the world that, at least for me, give one the ability to short-circuit that downward spiral of doom and make things a little more bearable.

All of us know what it is like to feel awful and hopeless about this disease. Please, share any tips that you may have in the comments section below. Print out the article and highlight anything that works for you - if you practice these things enough, they may become second nature when things get rough.

Read the full article: On "Suffering" and Multiple Sclerosis

I'm going to post a number of suggestions for things to get done in 2012. One thing that I think is very important to your short-term and long-term health is to make sure that you have a doctor that you love to monitor your MS and help manage your MS symptoms. Ask yourself, when you think about your current doctor, do you feel:

• Confident that you are getting the best care?
• Comfortable sharing intimate details about symptoms and medication side effects?
• Like you have a partner in health, rather than someone who only tells you what he or she thinks you should do without listening to your concerns or ideas?

If the answer to any of these questions is "no," you may want to seriously consider finding a new doc. I know it is a daunting prospect, but remember, we are in this for the long haul and we should feel like our doc is looking out for our best interests. Even if we get news we don't want to hear from our doc, there should at least be a plan in place for taking care of those things that can be managed.

Our doc should meet us where we are (within reason) - if we want to take a conservative route, he or she should help us find our comfort level with medications. If we want to try some complementary and alternative stuff, our doc should at least listen to what we have to say and work with us to make sure that the approach is safe or give us good reasons as to why it isn't the right thing to try, rather than just dismissing our idea.

You know in your gut whether your doctor is the right one for you. If so, great. If not, I strongly urge you to shop around until things are right. I'm including some links to help you in this process (as well as some pieces to convince you that changing is the right thing to do if you are not happy). Please leave your experiences and stories in the comments section below.

Read the full articles:

• Do you love your MS doctor? If not, it's time to go "doc shopping."
• Find a Multiple Sclerosis Doctor
• Readers Respond: What was your best or worst doctor experience?
• How to Get a Second Opinion for Multiple Sclerosis