I’m Dr. Picone – Raising Awareness for MS !

My name is Dr. Picone; a 20+ year Neurologist treating patients with MS.  I currently practice at Holy Name Medical Center in New Jersey.

The reason I am reaching out today is to humbly ask for your help in promoting our Indiegogo campaign launched on Sept 9th.  I have been investing a lot of time in money over the last 8 months getting ready for this moment.  The project is MS Connect.

Our Mission Statement:
MS Connect is a mobile app striving to create an organized and centralized platform for coordinating MS care. We are creating an app specifically designed to improve the quality of care for patients with Multiple Sclerosis. The MS Connect App will provide patients with an easy way to stay connected with their health information, while providing physicians with a multifaceted view of a patient’s disease progression.  This mobile app is not the cure but it is a step in the right direction.  It will greatly increase my ability to treat people with MS.
Our slogan:  Making Physicians better Physicians and Patients better Patients.
Here is one of the videos:

We are looking for people to really get behind this campaign to help get the word out to their family, friends, social media accounts, newsletter, etc!
I’m really banking on the strength of the MS Community to rally behind me and spread the word!  I have about 50 people, organizations, and social influencers on board to help so far.  Will you join me?!

With Respect,
Dr. Picone

Mary Ann Picone MD

Board Certified Neurologist

Member of New York Consortium of MS Centers

Board Member MS Hope

Facebook Page

www.MSConnectApp.com

@MSConnectApp

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

Breastfeeding and Meds (by Hannah)

This week is going to be a very difficult time for me emotionally. Tomorrow I have to get back on my MS meds. Tecfidera cannot be taken while pregnant, so I got off of it when I got pregnant with my sweet #3. Then she was born and I wanted to breastfeed for 3 months while I pumped enough breast milk to get her 6…read more

This story (in its entirety) originally appeared on Mormon MS Momma and was republished here with permission.