Has anyone been pregnant after being diagnosed with ms?

[mm1527mm]

I already have children but one of the things that really crushed me when i was diagnosed was 1. Wanting to be around for my two children and 2. I felt like my goals and dreams were shattered because i wanted more children four but now i dont know if it is too risky and it will worsen the symptoms any one who has had a child after diagnosis? How was your pregnancy? How was post pregnancy? Did stopping the medication result in further progression of ms? This would be for the future because i really need to get on a treatment and get myself together first. Thanks for the advice

[rjoneslaw]

There is a couple of people who are on the site.

[mm1527mm in reply to rjoneslaw]

Thats good to know! Hoping they reach out with some advice

[Shellilee]

I was diagnosed with MS and became pregnant without even knowing it. I was 43 years old when I gave birth and diagnosed with MS when I was 39. I call him my miracle child! I had two grown children before him. It was the best pregnancy ever!! All of my symptoms went away, I never had morning sickness, I only put on 7 pounds, was very active throughout pregnancy and everything was wonderful. I was even on Betaseron for years before and still on it when I conceived Plus on other meds. When I found out I was pregnant I stop all meds cold turkey. Never had a problem. Because of my age I was a high risk pregnancy. He was born perfectly healthy. He was even born with a cross on his four head… Talk about a miracle! He's now 17 years old. I can't really say my health went downhill after he was born but it has over the last five years. Maybe because it's been a little over 21 years since my diagnosis but I am now in a wheelchair and unable to walk. My MS has progressed to secondary primary MS. I have talked to many women over the years who became pregnant after diagnosis and they have no regrets at all either. If you want more kids don't let your diagnosis scare you away. God has a plan and if it's meant to be His will will be done.

[mm1527mm in reply to Shellilee]

Thank you for sharing your beautiful testimony. What medications are you currently on? Do you have any experience with tecfidera or ocrevus?

[Shellilee in reply to Shellilee]

Currently I am on no MS meds except baclofen for spasticity. My neurologist wanted me to start Ocrevus two years ago but I declined because of the side effects; like cancer. Instead I opted to join an Ocrevus support group from people all over the world who take the drug. They have reported that once they hit the 2 1/2 year mark they have gone downhill. That is five full infusions… Three have come down with leukemia, two have reported cancer, countless have experienced hospital stays due to major respiratory problems. Other side effects reported repeatedly are hair loss in clumps by the fourth infusion, major skin rashes, acne, itching, dental issues, The list goes on and on. A lot has experienced minor side effects and swear by the drug. For me, it didn't feel right. I mention my reasons to my neurologist, but I just told you and he is right at the two-year mark of prescribing it for his patients. He started prescribing it as soon as the US approved it through the FDA. Some countries have been using it for 5+ years so for me reading their experiences tell a lot. That US hasn't gotten to that point yet.

[mm1527mm in reply to Shellilee]

How long since you were diagnosed? Where is the ocrevus support group? I was leaning towards ocrevus. With those who had lukeuimia and cancer ? Any cancer in their family history?

[mm1527mm in reply to Shellilee]

Also how old were those who got cancer?

[Juliew19673]

Not me, but my bosses first wife who told me whenever she got pregnant all MS went away (while pregnant) and then it would creep back in. This was in the 70s - so before any DMTs. She had 2 (total of 5) so the pregnancy isn't a problem, but I'm sure that when it creeped back in the exhaustion would be a problem. Have the children!

[mm1527mm in reply to Juliew19673]

ThAnk you for sharing! I believe i actually thought my exhaustion with my one and two year old were from not sleeping but i believe instead it was the ms.

[greaterexp]

kdali surely has some up-to-date info for you.

[kdali in reply to greaterexp]

Ty!! I’ve been on vacay and missed this!!

[TracyBelle]

I was diagnosed in May 1999, & took Avonex for a year. Then I got a new Dr the summer of 2000, who said that Avonex was causing me to be sick, not the MS. He switched me to Copaxone (every day back then). He knew that I had just gotten married (I was already engaged when diagnosed), and he said that it was OK to try for a baby. (Avonex was not safe to get pregnant on)

I went off of the pill and took regular pregnancy tests. 8 months later I had the worst flu you can imagine. My mom had just spent the weekend visiting, and she had a dream that she heard my grandmother’s voice say “Well you do know that she is pregnant “, in an exasperated tone. I laughed and said wishful thinking. My husband was skeptical that next day about going to buy me another $15 pregnancy test, but I had to know before I made a Dr appointment for my flu symptoms. I stopped all MS medication and had a breeze of a pregnancy. I breastfed my son exclusively and I think that has many benefits for the mother. It signals your body that you no longer need to send blood to the baby because he has been born. I never wanted to be away from him any longer than he could go without nursing anyway. I would feed him and tell my husband “I will be back in 2 hours.” I began Copaxone again when he was about 8 months old but I still nursed my son his first year. I took part in a Patient Registry with the manufacturer and they would call me and ask about how we both were. Pregnancy and breastfeeding were both beneficial and safe even though I had Copaxone in my system when I conceived.

Now the fact that you ALREADY have 2 young kids changes things IMO. The nature of MS is unpredictable and there is no way to know the level of disability that you might progress to. The fact that you already have 2 healthy kids to love makes you way ahead of most people with MS. I never thought I would have kids because Avonex prohibited pregnancy. The fact that I got to have 1 baby was a blessing I never expected.

We all had plans for our lives before we were diagnosed. You wanted 4 kids, I had just received my license to practice law when 12 days later I woke up legally blind in both eyes. We have to alter our vision of what the future will be and accept WHAT IS.

My advice to you is to be grateful and love the kids you have already. It will take ALL of your energy to be the best mom to them. Adding a new baby would mean less time and energy towards the older kids, and additional stress on your illness and your marriage.

[mm1527mm in reply to TracyBelle]

Thank you for your advice. I have my law license as well. I was doing real estate closings because i have a one and two year old so that i could work from home. Since my diagnosis i have cut back on the cases that i take just to minimize stress. I appreciate your advice. My parents said the same thing. Although my husband and i did not plan on having another right away many people have said that they have had kids with ms but i do feel like now maybe that was not gods plan for me with all of this uncertainty. If you dont mind me asking how old were you when diagnosed? Are you still on copaxone? Has it helped? What kind of difficulties did you experience post pregnancy or just raising child with ms? Thanks for the information

[PWilli]

I don't have any personal experience but my friend had 2 children after diagnosis (already had 1) and she said pregnancy was the best thing. Her symptoms went away and she felt great. Just my opinion, but if you and your husband want more children, go ahead and try. If it's God's will, it will happen. And if you don't have more children, love and hug and be the best Mommy to your 2 precious gifts!

[mm1527mm in reply to PWilli]

Thank you!!

[Pia7]

I was diagnosed with MS in 1996 right after giving birth to my first child. I was 31 years old and started on Avonex. My neurologist pushed for me to start on a DMT immediately so I was forced to stop nursing after 3 months. Like you, my husband and I had always planned on more children (2 or 3). Since I didn’t have any more symptoms and I struggled with injecting myself, I went off of Avonex. In 1999 I gave birth to another beautiful baby girl. I had a fantastic pregnancy and postpartum. I nursed that daughter for over a year. Around 2001 or 2002 I started Copaxone. When I was 38 in 2003 I got pregnant again, unplanned this time. The pregnancy was great except I had a lot of MS symptoms (mainly fatigue). I gave birth to a gorgeous and healthy baby boy. After his birth I went back on Copaxone, then Avonex, Gilenya (made me worse), Tecfidera and now Ocrevus. Today I’m 54 years old and my MS is now Secondary Progressive (result of Gilenya). I still walk but I use a wheelie walker. My children’s ages are 23, 19 (20 in 3 months), and 16.

I don’t regret having three kids at all. What I regret was not taking care of myself better. Had I cared for myself maybe I would walk better and without a walker.

[mm1527mm in reply to Pia7]

Thank you for sharing!

[mm1527mm in reply to Pia7]

How has ocrevus been for you?

[Pia7 in reply to mm1527mm]

I’m really happy with Ocrevus. I feel better on it and I like the facts that infusions are every six months. I noticed a big improvement in how I felt within five months of my first infusion. I had more energy and for me that’s huge!

[mm1527mm in reply to Pia7]

Thats great to hear!

[kdali]

Hi! I’ve tried to make my experience as transparent and available as possible for anyone with MS who wants to entertain family planning. It’s a very long story and still unfolding so I’ll try to summarize.

I started fertility treatments and Copaxone during a relapse and stayed on Copaxone, until my “make up relapse” when our first was 8 mo old. Pregnancy made all the MS misery go away at 35 weeks and that’s when I had my first normal neuro exam. It all came crashing down when she was 4mo old and I was worse than I was before. I was switched to Ocrevus after the relapse at 8mo and had drastic improvements that lasted until my second and current pregnancy. I believe because of this pregnancy being incredibly difficult emotionally and so physically taxing on my body, I was basically attacked for a month straight by every MS symptom I’ve ever had (plus some of y’alls symptoms 🤣), but I’m fine now. I have not yet reached the promised land of pregnancy making MS go away and my neuro exam sucks again...but I feel it coming any day now! The fertility process this time around was incredibly stressful and I was considering being done after only the second round...but that one worked!

I agonized for months over “what if trying for another child causes me to become less of a mother to the one I already have?” and it’s still a scary, guilt causing, consideration. I’m crying right now thinking about it. I may not know what you’re going through, but I know what it feels like to deeply want another child and be terrified over the unknown.

When I was counseled by my MDs, my treatment was common practice for them, even though there’s “no approved medication for MS during pregnancy”. It was understood by all of us involved that my future baby needed a healthy mother going into pregnancy and I was delighted that, with my advanced age, we didn’t have to wait to see what my MS history would be or have a follow up MRI on treatment first or any of those traditional things MDs use to follow religiously. In fact, we probably would not have had any kids and I’d still be on those dumb shots and never would be blessed with the relapse that got me a drug that worked so well for me.

(Of course, it’s entirely debatable whether the subsequent doses will continue improvements or be a giant flop, but I don’t look like I lost a fight with a swarm of mosquitoes anymore, and that’s just one more win for me 🙌🏻 We shall soon see how my Ocrevus journey will unfold, and I’m excited about it!)

Gosh, I’m sorry, I’m not very good at summarizing 😵🤷‍♀️🤣

Whatever happens, please post here about it....there are more out there like you and they need to hear your story too!

[mm1527mm in reply to kdali]

Thanks so much for sharing your story. Please keep me posted on the Ocrevus. I began my first half dose yesterday.

[kdali in reply to mm1527mm]

Will do! I’m expecting my first full dose sometime in Feb...so we may be getting it at the same time (or you may be working on a baby by then!).

Welcome to the Ocrevus party! I hope you have fantastic results 🥰

[mm1527mm in reply to kdali]

Thank you!! You too! What symptoms did you experience after your relapse with your second child?

[kdali in reply to mm1527mm]

The relapse was painful freezing feet with a feeling of wearing too tight socks, cold patch on the back of my head, difficulty walking up stairs or having to walk more slowly with rest breaks, something similar to restless legs, and the return of word searching in the evening, brain fog, and heat intolerance.

Some of those I’ve had worse before, but the leg crap was new, different, and took a lot of energy and planning to deal with. I had a shiny new spinal cord lesion.

[mm1527mm in reply to kdali]

So sorry to hear you went through this. How long did it last?