Any fellow RRMS patients out there considering starting a family?

Hi,

I’m 27, diagnosed with RRMS two and a half years ago, no episodes since (touch wood). Been on Tysabri since and I am JC positive.

My MS nurse and Neurologist have given me figures and statistics on women with RRMS having children, but I was hoping to speak to people who have actually experienced this, as I have a ton of questions. My fiance and I are looking to start our family, but understandably I have a lot of concerns around what impact a pregnancy could have on my health and the disease in general.

Any momma warriors out there? Please help!

Kelsey

Hi Kelsey,

i have RRMS…and 4 young children!

I was diagnosed last May when my youngest was nearly 5 months old…my eldest was just 7, then 5 yr old then 3 yr old!!!

Life was busy enough anyway without waking up half numb one May Monday morning.

It is believed that MS goes into remission during pregnancy…which explains why they think I have had MS since 2006 BUT as I have been pregnant and breastfeeding for most of that time it is hardly a surprise that is was repressed!

The tiredness is sometimes difficult but you get on with it because you have to, they need me and there is no choice!

They are the best thing for me and the worst thing - the best because they are fun and beautiful and the best distraction ever but they definitely make you extra tired…

I am now on Tecfidera as there is no way I would self inject and fortunately I am walking well again so this momma warrior soldiers on…

I wish you all the best, if you wish to ask me any questions directly I don’t mind if you send me a private message.

Take care,

Roobs xx

Hi Roobs,

Wow you have got your hands full haven’t you! Great to hear that you are walking well again.

My MS Nurse and Neuro told me that women sometimes relapse in the first few months after giving birth and I think this is the main cause of concern for me.

  1. because its obviously not ideal to, as you say, wake up half numb one morning with a young baby. and 2. I still have a lot of lasting damage from my first episode as it was such a severe onset of symptoms (admitted into hospital because I couldn’t wee, then woke up 12 hours later completely paralysed and numb from the chest down. Took 3 weeks for movement to come back, a further 2 weeks for feeling and a further 4 weeks to get fully back on my feet). I’m scared that having a child would make me less mobile or somehow would cause an episode that left lasting damage.

I hope you don’t mind me asking but how long did it take for you to recover?

Take care,

Kels x

I was diagnosed with RRMS in 2012 and went on to have a baby in 2014. I’m now 5 months pregnant with my second. I knew that having ms wouldn’t stop me from having a family and when I asked my neuro of it was ok to have children his words were “of course”. That was all I needed to hear. Both pregnancies were/are pretty straightforward and whatever happens after the birth I’ll deal with it. Kids are a great distraction from this annoying disease and I wouldn’t have it any other way. Yes I get tired but my husband is great at taking charge and letting me have a lay in at weekends so it’s definitely doable if you have good support. Lisa x

Just in case it is a consideration, it appears Copaxone has been declared safe to use in pregnancy.

http://multiple-sclerosis-research.blogspot.com/2017/02/clinicspeak-newsspeak-glatiramer.html

urgh!

kids!!

what a terrible affliction!!!

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Hi Kelsey

Thank you for asking this question ! I have a five year old daughter from before I was diagnosed but they think I had ms then to. Also since her birth I have a new long term partner and the thought of not having children with him is really heartbreaking. My ms nurses and neuro have been keen to drum home the risks of potential relapse after pregnancy if we do and it’s terrifying. I’m sorry I can’t help more but I’m keen to see further replies to… Just more indecision … x

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P.s forgot to say I’m very nearly 27 to (that 30 is creeping!) and a thank you to Lisa for your earlier post and congratulations on your little bundles ! I agree entirely that they are wonderful distractions and with the right support network having children around is perfectly viable x

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It’s not about me having the energy/ability to cope with children I’d be concerned about but the fear of them going on to develop it. As it is, I do worry about my children or grandchildren getting ms. I would feel it was my fault. I’m not sure I would have chosen to become pregnant if I’d been diagnosed years ago.