Texas Moms!!

Did you know that we have a lot of local groups on the site for different states and countries? We added another one, for Texas Moms with MS yesterday and we’re aiming to promote one group a week or so, for the groups that already exist and also as we create the ones that are needed!

So if you are a Mom with MS in Texas the group is now here!

Our local groups on MomsWithMS.com are for moms to both get and provide peer support and recommendations to what is or isn’t working for them (doctors, pharmacies, etc.) and maybe even coordinate some events to get together locally or via phone/internet!

Please note that to access the group you must be a member of our private MomsWithMS.com site. If you are not a member you will be prompted to create an account and will have to wait for it to be approved before accessing the site, so be sure to fill out all the questions!

Pregnancy and MS

Very Pregnant KristinMultiple Sclerosis is an auto-immune disorder that is typically diagnosed between the ages of 20-40 and affects women much more often than it does men (ratios I found vary from a 2-3:1). Being the age that they are when diagnosed is during the fertile years of a woman’s life chances are that at least the heterosexual women are either having babies at the time, wanting to have babies or actively avoiding pregnancy. Despite the fact that these things are all happening at the same time it is amazing how difficult it is to find any sort of consistent recommendations when it comes to Multiple Sclerosis and in particular the treatment of it relating to both pregnancy and to breastfeeding.

Personally, I have two daughters, I was diagnosed well before even considering having children and am amazed to hear stories about what the moms I have met from all over the country are told when it comes to the ‘right’ thing to do for both themselves and their baby during this time. When I became pregnant it 2005, almost 4 years after being diagnosed, I was taking a drug called Copaxone which I had selected because the doctor who prescribed it told me that ‘if’ I got pregnant, basically it is the only drug not guaranteed to mess my baby up. This was a scary thing to hear and at this point I wonder how much stock he held in the company but needless to say I decided on this drug because I knew that if I did get pregnant I would want to keep it, and would prefer it not be medically damaged by my medicine (in regard to these drugs this is not current, it only represents what my doctors said to me many years ago).

Once I actually did become pregnant, I had a different neurologist who was clearly very nervous about me staying on any of the MS drugs, though my Obstetrician/Gynecologist told me that it was no big deal, that it was a “Class B” drug and that meant I had nothing to worry about. She also made a point to tell me that it was important to keep taking it so that I would stay strong and healthy to take care of the baby. Clearly this is when I began to see that I was getting a different story/opinion from just about every doctor that I spoke to. All of this was back in early 2005, and the one thing that they did agree on at this point in time was that the ‘other’ drugs were absolutely not safe, and that it was good I was not taking them.

I stayed on the medicine, and had a healthy pregnancy, delivery, and postpartum experience. I continued taking the medicine until my daughter was about 6 months old and other situations in life kept me from continuing.

I got back on the medication in 2007 after moving from New York to Seattle through the process of ‘rebuilding’ my medical team locally. I continued on the drug (same one as before) until I became pregnant in 2008 with my second baby. My reason for discontinuing the medicine was that my new neurologist didn’t see any reason to. I had been candid about my inability to take it on a very regular schedule and I appeared to be doing just fine plus MS usually goes into remission through pregnancy anyway, he told me that the risk of what could happen wasn’t worth it in his opinion.

Question his opinion I did, but though I knew my older daughter was turning out wonderfully I worried that there might be new research or some other variable that he wasn’t sharing. I stopped taking the medication at that time. My pregnancy was uneventful MS-wise and I was just fine until 2 months after having my second baby girl when I had the worst exacerbation to date in that it affected my mobility and use of one of my arms. I was prescribed steroids (IV) and the lack of clear information regarding the ‘safety’ of the steroids sent me on a frantic hunt to find other moms or other specialists who knew what they were talking about. My Neurologist had told me to talk to my Pediatrician, my Pediatrician said it was fine as long as it wasn’t long term, and the nurses administering kind of freaked out and recommended I ‘pump and dump’. It was very scary to be getting such varied information so soon after having a baby and while I was experiencing such awkward symptoms. I just wanted to get better and not hurt my baby and I did end up ‘trying’ to pump and dump but my daughter was exclusively breastfeeding and it was hard to keep her away long enough to get enough out. I could tell that it was still coming through because I could smell it and my daughter seemed to not like it as much but wanted it anyway.

It was at this point that I found some new doctors, a Naturopath as well as a Neurologist whose focus is MS. I learned about IVIG and started taking it because from the research about breastfeeding and the safety of IVIG I felt it made the most sense for me. Fortunately I recovered from this flare and at this point was motivated to look for other moms with MS. I created a community online and am constantly amazed by the variety of opinions being fed to us as a demographic.

Many moms are being told not to breastfeed, that it is more important to get back on their medications which aren’t safe for the babies.

To counter this, studies have come out as recently as last year that breastfeeding helps to protect a postpartem mom from exacerbation.

Many moms are being told that Interferons are safe, which completely contradicts what I was told in 2005.

Many moms are never even introduced to the idea of IVIG as a treatment option, surprising considering that I’ve been told that it is typically only covered by insurance when a woman with MS is pregnant.

Many moms are pressured to quit breastfeeding to avoid potential complications with medications.

Many moms are being told to just decide, without nearly as much information as you can see here in this article.

I ended up having another bad relapse (exacerbation) early this year and after much research and the fact that my munchkin is eating a lot more food than she is breastmilk these days I have decided to start taking medicine again. I don’t know if I will have another baby but surely the statistics will have changed by then and I will get to researching it much as possible, I have no idea what I will decide. I know many moms who have been either happy or unhappy with the pressures placed on them to make decisions they did or did not agree with, many successfully nursing with medication, taking no medication or weaning to take medication.

Following ones motherly instincts and doing what makes the most sense to any mom with MS seems to be the one thing most people can, pretty much, almost agree on.

Resources:
1 – Who gets MS?: http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/who-gets-ms/index.aspx
2 – Dr. Hale Breastfeeding + Medication Forums: http://www.breastfeedingonline.com/meds.shtml#sthash.zYQQEU1P.dpbs
3 – Pregnancy Links at and NMSS: http://www.nationalmssociety.org/Search?q=pregnancy&stype=0&chap=0
4 – IVIG: http://msj.sagepub.com/cgi/content/short/13/7/900

Article originally published by Kristin Bennett on Associated Content in 2010

Are You a Mom with MS With a Story to Tell?

MomsWithMSHello, my name is Kristin and I created the MomsWithMS.org community about 5 years ago. I felt like I both knew things that I wanted other moms to know, and also I had a LOT of questions that I wanted to ask other moms. The private online community has now been active for a long time, and I and over 1,000 other moms now do have a place that we can go to ask questions, but is the problem solved?

In my opinion No. As you and I both know, there are more and more people being diagnosed with MS every day, and a lot of those people getting diagnosed are either moms or potential moms to be. I know this because we are still getting new members every week who are recently diagnosed. This tells me that despite the blogs I see popping up by other moms with MS, and the support groups I’m seeing in other places there is still a need out there.

SO I want to offer to you, whether you have a blog or not, the opportunity to share whatever it is that you would like to share with the world. You can do this via the Share my Story link in the menu above this blog post.

You can choose to share your identity (or to stay anonymous) as you choose.

If you do have a blog, you are welcome to post an intro with a link that links to your post on your own site and/or include a link to your blog.

I hope you take this opportunity to share with the world the story that you hiding inside of you! Every story will be shared via both Facebook and Twitter where we reach a lot of people, if you are interested in specific numbers or have any questions for me please comment below and I will reply.

Moms With Multiple Sclerosis

Did you know there is actually a lot of famous moms diagnosed with MS? Here is a list to tell you about a few of them… While the diagnoses is always difficult, being a celebrity mom diagnosed with MS adds the challenges of keeping up with social appearances and pressures. So which celebrity mothers have been diagnosed with multiple sclerosis?

Ann Romney:
Wife of the 2012 Presidential nominee Mitt Romney, Ann Romney was diagnosed with multiple sclerosis in 1998. Together Ann & Mitt have five children. Ann initially used more traditional medicines to treat her symptoms, but later turned to alternative treatments such as acupuncture and Equine therapy. Equine therapy, also known as hippotherapy, uses horseback riding to improve core strength and limberness. This type of therapy dates back to 500 BC and is used to treat a wide variety of illnesses.

Anne Rowling:
Famous author J.K. Rowling’s mother, Anne Rowling, was diagnosed with MS and died at the age of 45. J.K. Rowling became a household name after publishing the Harry Potter book series. She has served as a patron of the MS Society in Scotland, and has donated millions to MS research. Her most notable donation of 15.4 million was to start a research facility at the University of Edinburgh, which will be named after her mother.

Marilyn Wilson:
Shemar Moore’s mother was diagnosed with multiple sclerosis in 1998. Shemar is best known for his eight years as Malcolm Winters on The Young in the Restless, and currently costars in the hit show Criminal Minds as Derek Morgan. He was also formally a fashion model and host of Soul Train. He and his costars have done several charity events to raise money for MS awareness and research.

Annette Funicello:
Annette Funicello was another famous mother with MS. She begin her acting career at the age of 12, starring on the Mickey Mouse Club. She later co-starred in several beach movies with actor Frankie Avalon. Annette Funicello tried many experimental, and sometimes controversial, treatments to improve her symptoms.

Teri Garr:
Best known for her comedic acting, Teri Garr revealed in 2002 that she was diagnosed with multiple sclerosis. She has a daughter named Molly. She was made famous for her roles in Young Frankenstein, Close Encounters of the Third Kind, The Black Stallion and Tootsie, among other movies and television series. Teri has used traditional medicines in addition to regular exercise to help regulate her symptoms. She especially enjoys the benefits of Pilates. Terri is also an Ambassador for the Multiple Sclerosis Society.

Mom Story :: 10 Years Later

Mom Story :: ChristinaIt was June 2004 and I was so busy getting ready for my September wedding that I was planning for almost 2 years. It seemed as though one day I rolled out of bed and could barely stand on my own two feet. I was so dizzy, a very strange light-headed dizziness. Everyone was convinced it was stress or maybe an inner ear infection. I started noticing other weird symptoms…like my right arm would get very cold and numb, my eye would start twitching out of nowhere, and these wierd “muscle-jumping” sensations. Of course when I googled all of this it came up that it was MS, which everyone laughed at and thought I was just a stressed out bride to be on the verge of a nervous breakdown.

After going to an ENT and even getting round of antibiotics (imagine it was that simple!!) I finally went to another doctor who sent me for a brain MRI in fear it was MS or a brain tumor. After the test I will never forget that my films were placed on the top of the pile…which is never a good thing. The next morning as I was in training for my job at the time there was a bunch of calls coming in and I found out that I had 13 legions in my brain and I had MS. It was a very emotional time and I was unsure what my life would become.

My soon to be husband stood strong by my side as well as my family and friends and we made it to the wedding and thankfully I felt good by that time.

I just had my 10 year MS anniversary and will be celebrating my 10 year wedding anniversary this September. I like to think my husband and I have a very strong bond after going through that right before our wedding. Our “in sickness and in health” started before our vows were even spoken. He has never missed one doctor’s appointment or one treatment in 10 years. I have an adorable little boy and a beautiful life. I also am under the care of an extraordinary doctor who has halted the progression of my MS and kept me attack-free for years.

This summer I will start planning my first MS fundraiser, which will take place in May 2015, so I can give back for the many things I have been blessed with.

**Event information coming soon!!

By: Christina Benevento

Talking to Kids about Multiple Sclerosis

As moms who are diagnosed with Multiple Sclerosis this is something that we all deal with. There are of course variances in how and what we share of course too because we are all different. Some tips are published by various Multiple Sclerosis (MS) Organizations as well and will be linked to in this post. Here are some stories and resources compiled from moms on and off our site:

When my daughter asked me what MS was around age 4 I explained to her mommy has little squiggles in her brain that make her do funny things sometimes. She asked if they hurt, I said no and I could tell how much more at ease she was from then on when I was struggling.
-Heather

Another mom spoke of a program offered once where there was an informational session called MS Journey that had therapists and activities to talk to the kids about it in one room, and the caregivers/spouses/partners were in another room. There was a lot of advice and tips for talking to kids given and the adults were able to voice their fears and frustrations. Wouldn’t it be wonderful if this were offered regularly for all of us families dealing with MS?

Some places have some camps for kids too, if you are interested in this contact your local chapters of NMSS, MSAA, and MSF for information.

Pharmaceutical companies have some advice too, for example on MSLifeLines (Pfizer).

Here is one book that is available, written by a mom, Stefanie Lazai to help other moms talk to their kids. You can go to Benjamin and see the book online, and either listen to it, or read it aloud to your child.

Some other books available online as .pdf’s or to order:
Mommy’s Story (from MSAA)
Daddy’s Story (from MSAA)

For older kids they can read about MS and other conditions on this site:
http://kidshealth.org/kid/grownup/conditions/ms.html

Personally I don’t like utilizing these resources, mostly because I have very few symptoms and when I do they don’t usually last very long. I don’t want my children to worry. If anything does come up, I explain to my kids (who are pretty young) that my body is simply not working right, and that hopefully I will feel better the next day. – Kristin

Another great resource is from DoingWheelies.com by Jenn about Tips for Talking to Kids about Disabilities. It is not specific to MS but it is very very relevant for all of us to talk to our kids about this because whether they see it at home or not, it can help them understand.

National Multiple Sclerosis Society has this page set up for families as well: Family Matters.

Please share any tips or resources you have to share in the comments!