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

7mo After HSCT

Home 7 months post

Three week ago I was preparing a much different post for all of you. It was a post about my MS returning…

HSCT Journey

Last I posted in December I was sick with a horrible bout of sinusitis. I had been warned it is not uncommon for old symptoms to return during illness post HSCT but this felt different.

My leg which was effected by damage caused by MS prior to treatment was stiff and became even more stiff over a span of two weeks, my right arm became weak, my vision in my right eye became doubled. After a second round of antibiotics my sinusitis was gone but these symptoms continued to worsen. Panic slowly set in that my MS had returned. It just didn’t add up, it felt similar to how I felt prior to HSCT but not exactly the same, I noticed they were worse in the morning but improved throughout the day (total opposite of MS), I had no fatigue, I had no tingling or numbness.

After a week of this with no sign of infection the realization that MS may be creeping its way back became a reality as my vision blurred more and my weakness became more dominate in my arm. I spoke with Dr Burt’s office who arranged for me to come out to be evaluated as soon as possible to figure out what was wrong, However the day after I spoke to them everything changed….

I went to visit my Ear Nose Throat specialist in hopes she could confirm or rule out a sinus infection for certain. After a CT scan of my sinuses, infection was ruled out. After her I visited the eye specialist that has treated me for optical neuritis for the past 4 years for his opinion on my vision. After an extensive exam and new visual field testing he assured me this was not optical neuritis and my vision had improved greatly since HSCT. He assured me this was not MS related but unsure of what could be causing the double vision. Frustrated, panicked and overwhelmed I felt the best hands for me to be in were in Chicago with Dr Burt and his team until that night I spoke with a friend who is a pharmacist about what was going on. I mentioned that I had been on synthroid in our conversation at which point she told me to contact my doctors immediately about rare serious side effects caused by synthroid….

After some blood work and stopping the medication synthroid was determined as the culprit for my current issues at the time.

I had been on synthroid for hypothyroidism since September, I had a few issues with the dosing, it had to be lowered frequently but once I reached a low dose it worked well for me (or so I thought). My reaction to the synthroid was masked by the sinusitis for almost 3 weeks, what I thought was sinusitis bringing back old things was actually a reaction to synthroid that was building up slowly but horribly.

After stopping synthroid 14 days ago I have completely stabilized with all of my similar to MS symptoms slowly disappearing. My vision improved almost immediately after stopping the medication and is now about 95% back to normal.

Scared is not the word to describe how I have felt the last few weeks…

Today I am happy to report I am seeing the true gains of my strength and endurance post HSCT (and post synthroid). Today I went grocery shopping, took my toddler to a music class, did homework with my kindergartener after picking her up from school, made dinner then did something that was just a dream a year ago.. Took my two amazing children to the playground to play….

My MS is still gone.

While going through this situation and now feeling better it really made me see how much my quality of life has improved. As I have said before my biggest and only regret is not having HSCT done sooner.

I have a long way to go strengthening my leg that MS destroyed. Although big issues, my leg and a bit of balance issues are the only daily reminders that I ever even had MS. I am confident that this was a speed bump in my journey of the beginning of my new life… Life after MS

Post originally appeared on Heathers HSCT Journey page on Facebook, republished here with permission.

From Denial to Supported

LoveyIt started with a car accident on my way to work. I go in to see the Dr. about the pain for several weeks and realize I’m starting to lose my vision in my left eye. Am I going blind from a concussion? What’s happening to me? I visit an eye Dr who says, no.. I can’t see anything, see a Neurologist. My first visit to the Neuro said that I had optic neuritis and she mentions MS but wants to do an MRI and spinal tap to be 100% sure. I had never heard of MS before and was in complete denial that I could have a disease like that anyways. But after researching, going through the stages of grieving, I finally accepted that this was going to be my life from now on.

Not one to keep things to myself, I told friends, family, church family, found support groups and immediately begin to surround myself with others who had been in my shoes and knew what I was experiencing and could support me. Friends who didn’t understand or I felt pulled me down, I let go of and filled their vacancies with positive friends. 

I lost my job and not wanting to remain depressed I took up crocheting for friends and family and even made a mini business out of it. It is a way to ease my mind while being creative at the same time. I started volunteering to help others and give back to those who have helped me. 

As a mom I face the struggle balancing children while trying to save my “spoons” and sanity. I try daily to run a stress free home and with 3 boys-that’s not happening anytime soon, but we do our best.  

My advice to you, be patient with yourself and don’t be afraid to tell other so that they can support you. There you will find strength to make it through each day. Out children are our biggest fans so include them in your healing process and lifestyle changes. They will in their own way let you know they care- even if it’s just with a kiss.

Accessory Fundraising!

Moms with MS Bravelets

Every purchase raises $10 for the Moms with MS Community. Click the picture to see more Bracelets!

I was so happy when I found Bravelets! The first page to set up of course was for the Moms with MS Community. The bracelets or “bravelets” as they call them are really good looking and there are enough different styles to perk up a variety of styles. In the past I was excited about Shopfunder.com and I was bummed to recently realize that they weren’t around any longer, so I was grateful to see this replacement! I am hoping with their focused offerings they will have more success. Shopfunder had a very wide variety of products created by individual artisans which made it that much more important but I can imagine there was a lot more overhead too.

I’m glad to see that the world of crowd funding/buying/etc is opening up to everyone, it gives a lot more options to people that are looking for creative ways to get support!

Stay Brave!!

Post originally appeared on KristinBennett.com and has been republished here with permission.

I was diagnosed with MS in 1977

I was first diagnosed with MS in 1977 via a spinal tap. I am now 73 years young, am ambulatory and currently the only MS medication I am on is Baclafan. I have had Avanox (made me very sick so took me off) then was put on Copaxone. Did very well on it for years till the co-pay suddenly rose to oer $467 a month an I couldn’t afford it so my MS Neuro doc took me off it and everything else except the Baclafan. I am doing ok but the fatigue factor really gets to me. Then last March 4th my dear husband passed away suddenly of a heart attack. When that happened I was in the hospital with an intestional blockage. Since then life has been a horrible struggle. I have my house up for sale in hopes of moving to the Phoenix/Sun City area to be near my only daughter from Washington state. I’ll shut up cuz this is longer then I intended and don’t want to bore you.

Blessings,

Bobbi