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Solu-Medrol: The Good, The Bad and The Ugly

Solu-Medrol

Many of us with multiple sclerosis (MS) have taken the Solu-Medrol "journey." While the benefits can seem miraculous in terms of resolving symptoms, the treatment can have a dark side. Learn from others, share your tips and have a better "ride."

More on Solu-Medrol

Multiple Sclerosis Spotlight10

Low Muscle Endurance and Impaired Gait in Early MS

Tuesday January 31, 2012

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.

Why Do I Need a Test for JC Virus Antibodies If I'm On Tysabri?

Tuesday January 31, 2012

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


Tips on Self-Injecting MS Meds

Tuesday January 31, 2012

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

Tips to Overcome "MS Guilt"

Monday January 30, 2012

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.

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