The social network for people living with multiple sclerosis

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ElizabethBy Elizabeth Salas, MPH, Teratology Information Specialist, MotherToBaby California

 

“My husband and I have been trying to conceive for years, and we’re finally expecting. What can you tell me about the medications I’ve been taking?”

This question is one we receive every day on our MotherToBaby phone line. On this particular day, I was speaking to a pregnant woman who had struggled for years to conceive with MS. She was now doing well, and together with her partner decided to try again. After a preconception appointment with a high-risk obstetrician, speaking with her neurologist, and researching medications and pregnancy, they began trying and were surprised when they conceived right away. This caller wanted to know how safe the medications she was taking would be for her developing baby. I started by reminding her that in every pregnancy a woman has a 3-5% chance of having a baby with a birth defect; the question was whether any of the medications she was taking increased the chance of a birth defect above this background risk.

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What MS Isn’t

What MS Isn’t
Guest post by Barbara A. Stensland

There’s plenty written about what MS is, but what isn’t it?

It’s not:

  • An ‘easy’ illness (I’m probably not the only person to be told, ‘Well, thank goodness it’s nothing more serious, eh?’)
  • An excuse – it is what it is and I won’t be apologising for it
  • A competition – why tell me your MS is so much worse than mine? If it makes you feel better, go ahead; it just makes me feel guilty

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MyMSTeam Guest Blog Post by: Lindsey Miller Santiago

lindsey_headshotAs a person with MS, I understand the importance of connecting with others who are also living with this disease, and I wanted to share information about an exciting new research initiative that is powered by people with MS.

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Survivor’s Guilt and MS Awareness
By, Kathy of FUMS

hustle-and-bustle-494069_1280According to Wikipedia, “Survivor guilt (or survivor’s guilt; also called survivor syndrome or survivor’s syndrome) is a mental condition that occurs when a person perceives themselves to have done wrong by surviving a traumatic event when others did not. It may be found among survivors of combatnatural disastersepidemics, among the friends and family of those who have committed suicide, and in non-mortal situations such as among those whose colleagues are laid off. The experience and manifestation of survivor’s guilt will depend on an individual’s psychological profile.”

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When we hear that MS is “no big deal,” and we should be “doing fine,” we are hurt. We feel dismissed, ignored, and belittled when we hear these things, because we have all suffered so much with this illness. We may have “invisible symptoms,” things no one else can perceive, but because so much pain for us on a daily basis. We may have suffered dozens of disabling relapses, but we have recovered and now appear fairly normal. To hear that it is “no big deal,” discounts our experience, and our pain.

 

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Can I Breastfeed While Treating My MS?

 

ElizabethBy Elizabeth Salas, MPH, Teratology Information Specialist, MotherToBaby California

 

Welcoming a new baby brings a lot of excitement as well as questions, and every mom wants her new bundle of joy to get the best start possible. One of the best things a mom can do to give her newborn a healthy start is to breastfeed – but if you have a medical condition that requires taking medication, should that impact your decision about whether to breastfeed? Let’s review what we know about the medications used to treat multiple sclerosis (MS) and what we know about their use in breastfeeding.

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In December 2014, we asked MyMSTeam members, like you, to participate in a survey about what matters to them in MS. We sent this survey because we believe that you should have a voice in how new MS treatments are developed and how companies prioritize the MS symptoms to tackle next. All the responses were anonymized and no personally identifying information was shared with anyone.

 

As promised, we are now sharing the results with you.

 

We believe that when you are diagnosed with MS, getting perspective and connecting with others with MS can help you better manage your life with the disease. Throughout the year we’ll continue to share research results like these with you. Even if you did not directly participate in this survey, we are writing this blog post as if you had, as you are part of the MyMSTeam community, and we want you to feel part of this information-sharing process. We’ll keep you posted on upcoming surveys.

 

Here are a couple of highlights from this “What Matters in MS” survey:

  • The top three DMTs (disease modifying therapies) were Tecfidera, Tysabri, and Copaxone.
  • More than half indicated they had switched MS therapies within the past two years, and the majority of them switched to an oral drug like TecfideraGilenya, and Aubagio.

Below you’ll find the rest of the results “What Matters in MS” survey. (Click the infographic below to enlarge it.)

Infographic_MS_WhatMatters

“Be patient. Wait. No rush. You have plenty of time.”
How many times during your life have you heard these words of wisdom being uttered by those around you? I don’t think I can count.

 

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I have always been a very determined, sometimes slightly “manic” person when I have my focus set on something I want to do, and it may appear sometimes that I am rushing, hurrying, and pushing the limits. This is not really the case, however. Since I was diagnosed with MS, I now have a sense of urgency that I never knew before. My time is unknown, undetermined, unpredictable. Tomorrow, I may or may not have the same cognitive and physical abilities that I have today.

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Happy New Year from MyMSTeam!

“There are no strangers here; Only friends you haven’t met.”

                                    -William Butler Yeats

 

Happy_Holidays

We’re very grateful for your presence on MyMSTeam, and hope you’ll continue
to visit and connect with us, and more importantly, the members of MyMSTeam.

Have a wonderful new year in 2015! Your friends at MyMSTeam.

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Elizabeth

 

By Elizabeth Salas, MPH, Teratology Information Specialist, MotherToBaby California

 

 

Whether you are planning pregnancy or currently pregnant, some of the most important decisions you make will be regarding medication use during pregnancy. For many women with multiple sclerosis (MS), navigating through different sources of information and deciding on treatment during pregnancy can be difficult. In addition to talking to your providers, you will want to be informed of the latest and most accurate information on medication use during pregnancy. Let’s begin with the basics.

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