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The Unspeakable Bits from a Life with MS: Conspiracy Theories

Blog Summary

In the profit-driven, 24/7 news cycle of a world in which we live, it’s amazing the number of outrageous theories about multiple sclerosis one hears. I believe that the internet has become the most powerful tool people living with MS have at our disposal. The access it allows us to previously hard to find research, historical data and others living with the disease around the globe is an informed patient’s dream. To paraphrase Newton’s Third Law of Motion, however: For every action there is an equal and opposite reaction...

Progress in progressive MS: Report from the trenches of MS research

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One important way researchers share their latest findings at big meetings like the American Academy of Neurology is during the twice daily “poster sessions.” During these sessions, researchers display the results of their studies on wall sized posters and these posters are pinned to rows upon rows of portable display boards in one of the largest halls of the convention center. During these “sessions” the authors of the posters stand by their boards and are available to present and discuss their work with other scientists. Think scientific speed dating! The MS poster sessions have been jam packed, so it really feels like you are in the trenches of MS research. We are learning more and more about what drives MS progression, or worsening – which many people with MS will eventually experience. Understanding the factors that drive MS progression will provide new approaches to stopping, reversing and restoring what’s been lost. One of these factors appears to be smoking. Previous studies have shown that smoking can increase the risk of developing secondary progressive MS (the progressive form of MS that follows an initial diagnosis of relapsing MS) by as much as 3-fold! The good news reported this week during a poster session on MS health outcomes research is that this risk is reduced by quitting. The authors found that for every year that passes after a person stops smoking, the risk for progression is reduced by 5%. The reasons why smoking promotes progression remain to be determined, but I think we know enough now to strongly state that people with MS who smoke should really stop...

Promising new treatment approaches making news at the AAN meeting

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Greetings from Philadelphia! You might remember that Philadelphia was our Nation’s capital during the revolutionary war. This week, the city of brotherly love is the capital of multiple sclerosis research as thousands of neurologists gather here to report their latest discoveries. I have been impressed by both the number and the quality of studies on emerging therapies for MS being presented this week. One of these studies was the eagerly awaited clinical trial of the pregnancy hormone estriol combined with Copaxone in relapsing-remitting MS. This study was inspired by the observation that MS relapses are less frequent during the third trimester of pregnancy, a time when estriol is at its highest level. In this trial of 164 women, the investigators determined that pregnancy levels of estriol plus Copaxone reduced the rate of relapses after one-year by 47% compared to women taking Copaxone alone. There were also significant positive benefits observed in the scores of cognition tests. These positive effects were less significant in the second year of the study – the reasons why are not clear, but a more thorough analysis might reveal some answers...

What CAM Can – and Can’t – Do

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A few years after I was diagnosed with multiple sclerosis I went to a doctor’s appointment for reasons unrelated to my MS. The nurse who took my medical history confided in me, behind closed doors, that she, too, had MS – and that she was treating it not with one of the handful of FDA-approved disease-modifying therapies (DMTs) that were then available but with bee-sting therapy. Why the whispers? She didn’t want her colleagues – and especially not the doctors she worked with -- to know she had chosen this complementary/alternative medicine (CAM) method over one that was more widely accepted in the medical community...

Tilt-In-Space

Blog Summary

In May 1997 I graduated from the University of Michigan, Flint with a Bachelor of Arts degree in sociology. I was diagnosed with multiple sclerosis six months later. I was 23 years old. From the beginning, this disease was aggressive. Within a year of diagnosis, I had tried each of the three disease-modifying medications that were available at that time. Unfortunately, I continued having flare-ups almost monthly. I spent numerous hours receiving intravenous steroid infusions to combat inflammation.  At physical therapy I learned how to properly use a simple cane, but my MS was relentless. I quickly learned how to use a small-base, and then a large-base quad cane to assist me with my wobbles. When my wobbles became falls, my therapist recommended using a walker...

Choose Wisely

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When it comes to doctors, I always follow instructions. When I’m sick, I take the medicine they give me. If I have a pain, I rely on them to tell me how to get rid of it. When I was pregnant, I didn’t even bother with those pre-natal classes. My entire plan was just to do whatever the doctors told me to do. When it comes to MS, my usual modus operandi is letting me down. I’ve been very surprised about how much has been left up to me. Particularly since the “me” in question is a fairly uninformed rookie when it comes to serious medical issues. What drugs do I want to take? Do I want to modify my diet? Is physical therapy the right choice for me? Do I want to take vitamins or supplements?

Progression.

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I’m approaching the one year anniversary of my diagnosis with multiple sclerosis, and as you can imagine, it’s on my mind a lot. Although I don’t know if there’s any way to really be prepared for news like this, I obviously knew that MS was a possibility. I’d been asked a lot of questions about “numbness and tingling” and it takes about 10 seconds and Google to understand exactly what that means.

Shared Decision Making

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Do you and your health care team employ a shared decision making process?   Shared decision making (SDM) is a process in which clinicians and patients work together to select tests, treatment and disease management based on clinical evidence and the values and preferences of the patient. I learned a great deal today during a teaching course at ECTRIMS 2013, entitled “Shared Decision Making for Multiple Sclerosis Treatment.”   I am a huge fan of a shared decision making approach. Besides the simple fact that it results in more dignity for the patient, I believe it is crucial to increasing adherence.  When people are prescribed treatments that they don’t want (either because they think they don’t need them or are afraid of some of the side effects), there is a very good chance that they will not use the medications correctly – or at all.

Moving forward on progressive MS

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Hardly a day goes by when I am not asked the tough question, “When will there be a therapy for my kind of MS?” The people asking this question are talking of course about the type of MS that doesn’t wax and wane, but instead creeps slowly or quickly along, robbing a person of crucial abilities and quality of life. These are big issues but we are making progress. In the last couple weeks we’ve seen the launch of two new clinical trials that are aiming to stop nervous system damage in people with progressive forms of MS. These trials try to address a seriously unmet need for treatments that can stop or reverse worsening of symptoms.

Fear: Confronting the enemy

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I want to pick up where Trevis left off – talking about how he and his wife confronted fears about the future and advanced MS by getting to know more about the “enemy". Fear of the disease can be disabling, sometimes more than the disease itself. Fear can literally stop people in their tracks. So the best strategy is often to think about what frightens you the most (which will be different for every individual) – whether it’s reduced mobility, loss of employment, threats to your independence, a shortened life expectancy, or anything else – and work proactively to help yourself feel less vulnerable, safer, healthier, and more in control. The next step is to get educated about the issue or issues that scare you and take steps to build your safety net. And if you’re not sure how to go about that, an MS Navigator can guide you.

Vitamins & Supplements: An interview with Dr. Brenda Banwell

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Following last week’s webcast, Living Well with MS: Lifestyle, Diet and Complementary Therapies, we sat down with Dr. Brenda Banwell, MD, to get answers to your questions about vitamins and supplements that are potentially helpful and harmful for people with MS.In addition to Vitamin D, what other vitamins or supplements do you recommend taking on a daily basis to help MS? There really isn’t anything else that’s even close to vitamin D in terms of research support for its use in MS. However, I do a blood test of the serum levels of vitamin B12 to make sure my patients aren’t deficient. Vitamin B12 deficiency has a negative impact on myelin, which is important for neurological function and is a particular target in MS. In fact, B12 deficiency can actually look like MS in some patients, and having low B12 if you have MS can further compromise the brain and spine. That said, healthy people who are eating a regular diet are rarely deficient in B12, and if you have normal levels, taking additional B12 has no proven value. People who are on some extreme diets or don’t eat red meat are more likely to have low levels and should be treated if that’s the case.