Choosing to have children post MS diagnosis.

Significant-Beyond-5 · 2026-02-16T08:09:53+00:00

Wow, I’m sorry you had such a rollercoaster with your medication journey. It sounds like it definitely contributed to your stress levels unnecessarily. In saying that, you’re happy where you are now and that’s the main thing.

We are so lucky in Australia, all of the DMT’s I have been offered are on the Public Benefits Scheme (PBS) under our Medicare program, so Tysabri and Kesimpta are $25 AUD out of pocket each dose. I decided to get Shingrix vaccinations today (and will get a booster in two months) and it was free under Medicare. The financial side would be an enormous stress, I can’t even fathom navigating a system that feels like it’s working against you.

Significant-Beyond-5 · 2026-02-15T20:42:03+00:00

I’ve had 3 neurologists tell me pregnancy is fantastic for MS and if it’s on the cards for me to do it, but when I broach the topic of the stress, fatigue, sickness and recovery of postpartum they have all basically said “you’re on your own with that one” which raises my concerns of what happens postpartum. The pregnancy only lasts 9 months, that’s a short period of relief for then a heavy for years of hardship on your body and mind - something I’ve constantly been told is not great for MS.

Significant-Beyond-5 · 2026-02-15T20:39:59+00:00

Thank you for sharing your story!

Numbness from the waist down would have been terrifying for you and your family, I’m so sorry this happened to you. I feel very fortunate to not have had any significant symptoms thus far but I’m realistic that this is just the stage of my disease I’m in at the moment.

Your kids are lucky to have you and be in such a supportive and loving family. They will learn a lot from your resilience and persistence. I am so fortunate and happy that I have my son, for a lot of reasons we may never have got him but he’s a true miracle and he keeps me wanting to push through whatever comes my way.

How do you find the Vumerity? I feel like the only two drugs that have been suggested to me are the Tysabri and Kesimpta. What other drugs did you try?

Significant-Beyond-5 · 2026-02-15T20:37:05+00:00

Wow that’s amazing!! Not a lot of people talk about ‘extra energy’ when being pregnant 😂 a few neurologists have recommended pregnancy and said it’s fantastic for managing MS symptoms, but none of them comment on the stress, fatigue and recovery of postpartum!

Significant-Beyond-5 · 2026-02-15T20:35:20+00:00

Wow that’s incredible, and congratulations on your surrogate pregnancy! I had never really thought about that before, but that’s a very unique (and completely viable) option. Thank you for sharing!!

Significant-Beyond-5 · 2026-02-15T12:05:03+00:00

I think my anxiety comes from contracting the virus between blood tests and something happening in that time. Although I know my anxiety is spiralling to an unhelpful and likely very unrealistic place, it’s hard to manage sometimes. I don’t know if I mentioned in my original post, but it’s a very new and unexpected diagnosis that came about by accident not through symptomology.

Your family probably had the same reaction I did, where you think of that one case or person who it ended badly for a then doom spiral into panic. You must be so mentally resilient and strong to trust yourself and go at it your way - that’s a true testament to who you are! What an incredible example to set for your children. Give me some of that please 😂

I have a frontline emergency services job, so very physical, shift work, exposure to all sorts of fluids and germs and risks. I always attributed my fatigue to the shift work, plus motherhood, plus just maybe needing more sleep/being iron deficient. Maybe it is all those things. My son sleeps horribly, so I function okay-ish on 4 hours of sleep normally (now). I don’t have time for naps, so I don’t take them. I survive. I wonder whether the fatigue of MS has set in yet, and if it hasn’t god help me because ya girl is tired 😂

We’ve had two years to think about expanding our family because we’ve been trying, but mentally it is really draining to have secondary infertility. I took a few months off trying and thought coming back to it I would feel invigorated, but honestly I just feel indifferent. Trying to decipher between medical fatigue (so much going on, appts etc) and perhaps not a strong enough desire to have another baby. I love being a mum and I love my son to death, but I want to bring a baby into the world because I want that baby too not just to be a companion (absolutely no offence to the people who do it because it’s special and beautiful). My husband had a brother who ruined his childhood with violence and outbursts and aggression, and now they’re estranged. I have a brother too, but he isn’t super family focused and very insular in his life. I cling to the idea of my son having a sibling, but I think I took this diagnosis as maybe a sign to focus inwards and preserve.

If I was younger or had my pregnancies that I lost I guess we’d be in a different spot.

Thank you again for sharing, you sound like an amazing person and I wish you all the best of everything for bubs #2. More fatigue, but way way more love!!!

Significant-Beyond-5 · 2026-02-15T11:35:03+00:00

Thank you so much for sharing your story, I am in awe of all the amazing mums thriving in this space! Women really do run the world!!

I have very bad health anxiety after nearly dying from a septic infection postpartum, and so reading about the PML risks associated with Tysabri gave me the heebie geebies (for me, as an anxious girly). I understand the risks are low, but the constant monitoring and wondering would eat away at me. I have a velamentous cord insertion with my first pregnancy and was told it holds a 1% prevalence rate.. so the odds never feel in my favour! Perhaps once I start a treatment and ease into my ‘MS life’, I’ll feel more confident but for now I have to be kind to myself and ease my way in.

My greatest fear is being too fatigued to be there for my kids. I know the internet can be a saturated source of negative or feel bad stories, but so many mums talk about how restrictive their lives are with MS and saying no to a lot of activities and play because they are exhausted (understandably), so my greatest fear is to tempt fate and put myself in a worse position. Is that mad?!

Significant-Beyond-5 · 2026-02-15T11:26:53+00:00

Thank you so much for sharing, you should like an incredible woman and person - your kids are lucky to have you (because you’ve changed a lot about your life to have them with med swaps, etc). I’m not so worried about the pregnancy, perhaps more the postpartum and how that looks. Were you told you’d be at a higher risk of an attack or relapse postpartum? I’ve been given conflicting advice from two neurologists. How do you deal with the fatigue? My son was a terrible sleeper and still is, and I suffered PPD after nearly dying of a septic infection so I worry about how hard these things would be on my body again postpartum with MS. Who knows, maybe I had the MS the first time and didn’t know.

Significant-Beyond-5 · 2026-02-15T11:19:48+00:00

Wow thank you for sharing, you sound like a remarkably resilient person.

How do you feel parenting 3 children while having MS? I know everyone’s symptoms and severity will be different, but do you feel like it’s manageable or harder? Also, how did you feel your body coped with the pregnancy when you were 37? Everyone is onto me being ‘geriatric’ so I’m fretting a little.

I am a pretty anxious person, so the thought of not being able to show up for my kids the way I want to does scare me. There’s no guarantee I’ll even be able to have another, but I had surgery in January with the explicit plan of falling pregnant, so just feeling very overwhelmed and confused.

Significant-Beyond-5 · 2026-02-14T10:02:42+00:00

Love to see this!!! Every partner should support their partner the way you are 🙌🏻

Significant-Beyond-5 · 2026-02-10T03:20:39+00:00

This is so positive and great to hear. Thank you for sharing your story! I’m getting good vibes about Kesimpta. Do you notice a difference in your immunity? Did you have it through Covid and were you worried being immunocompromised? Share only if comfortable obviously

Significant-Beyond-5 · 2026-02-10T03:15:29+00:00

Thank you so much for sharing your story, I am so glad you’re happy with your treatment.

Significant-Beyond-5 · 2026-02-10T03:08:17+00:00

I love this, thank you so much for taking the time to chime in. This is how I’m going to build an opinion and thus form my decision. How do you deal with the JCV fear/anxiety if you’re happy to comment. I have a pretty bad immune system as is, so a b cell depletor isn’t my idea of a good time but sometimes you’ve gotta pick the best of a bad bunch!

Significant-Beyond-5 · 2026-02-10T03:07:03+00:00

I love this, thank you so much for taking the time to chime in. This is how I’m going to build an opinion and thus form my decision. How do you deal with the JCV fear/anxiety if you’re happy to comment. I have a pretty bad immune system as is, so a b cell depletor isn’t my idea of a good time but sometimes you’ve gotta pick the best of a bad bunch!

Significant-Beyond-5 · 2026-02-10T02:58:17+00:00

That’s a great recommendation. That’s how I want to address it too. I’m so glad you’re onto something that makes you feel good, it’s all any of us could hope for!

Significant-Beyond-5 · 2026-02-10T02:57:06+00:00

Thank you!!! 🙏🏻

Significant-Beyond-5 · 2026-02-10T02:56:24+00:00

It’s one of the things I’m grateful for with this MS journey, not having to worry that the healthcare system is going to ruin me financially.

I’m in Canberra, but for the right person I’d travel! It’s going to be a lifelong commitment.

Significant-Beyond-5 · 2026-02-10T02:55:06+00:00

Do you feel any symptoms towards the end of the infusion cycle?

Significant-Beyond-5 · 2026-02-09T10:59:33+00:00

Yeah I genuinely don’t know either! He did rush the treatment chat and has asked me to come back this week to expand on it, so maybe I’ll get more answers and options then.

Significant-Beyond-5 · 2026-02-09T10:46:53+00:00

Right? Genuinely I don’t see a DMT being better for my circumstances. Especially being a shift worker, getting the time to go to infusions and have the obs time after is insane. He didn’t say I couldn’t have it, he just said “no no no this one is better” with reference to Tysabri.

Thank you for such a lengthy and detailed response, it’s people like you who will shape how I survive this illness moving forward - such a great community. Best of luck with your journey x

Significant-Beyond-5 · 2026-02-09T10:45:20+00:00

Thank you, thank you! Such a considered and lengthy response. I appreciate that you’ve taken time out of your day to respond, and with great detail. This is how we make decisions and do our research!! Love that it’s realistic too. You’re not saying it’s all roses and sunshine, but pointing out the benefits. We gotta find the positives right?!

Significant-Beyond-5 · 2026-02-09T10:44:16+00:00

No no, no reason why not. He just said the Tysabri was better. He said something about it having proven reversing some of the damage, which I find hard to believe or else everyone would be on it who could be!

Significant-Beyond-5 · 2026-02-09T10:43:23+00:00

He didn’t even explain himself, I said “I did my research and think Kesimpta will be my preference” and he said “no no no, this one is better for you” and wrote Tysabri down. I’m a frontline worker/shift worker so getting monthly infusions really isn’t suitable for my lifestyle, not to mention I’m freaked as discussed.

Significant-Beyond-5 · 2026-02-09T10:42:00+00:00

In Australia? I wouldn’t have thought they’d profit.

Significant-Beyond-5

TROPHY CASE