I have MS and DP putting off TTC because he's scared I'll go downhill...

[forcookssake]

I was DX'd 8 years ago and have been with DP for nearly 4 years. I want children, but it is only the last year we have seriously discussed it. He has said he'd love to have a family with me BUT...

He is scared by the risk that pregnancy poses to my (relative) wellbeing. I am taking DMT which I'd have to stop for the duration of TTC, pregnancy and BF. At a conservative estimate that'd be at least 18months off the drug treatment although in practice could be much longer.

I've talked to my MS nurse and the neurologist but 'this is something I/we have to decide on ourselves'. What I'd love is facts, figures and statistics but none are forthcoming!

I wondered if anybody here has any experience of this type of situation - I'd really welcome other perspectives. I do not know ANY mothers with MS and this is first time I've ventured online on this subject... thanks in advance for any comments.

Hi!

Don't know if I can help you but I'm a mum with MS. My son is 7 years old and I didn't know I had MS until after I'd had him. I'm now around 8 weeks pregnant so this is the first time I've gone into pregnancy knowing about the MS.

From what I understand, people tend to be very well MS-wise when pregnant and breast feeding. Although there is a higher risk of relapse afterwards. But the way in looking at it is that at least I know I have MS and can plan for relapsing (so arrange for friends etc to help). And from what I've read, long-term pregnancy etc doesn't affect the course of MS.

I guess the 'trickiest' time is ttc as you'll be off your meds but won't have the 'protection' of being pregnant. I don't have any experience of this part as this time was an accident (not recommended as I was on a lot of meds). Would it be worth you starting to chart your cycle etc now so you get to know your body as well as poss for when you actually start ttc? That way, hopefully (although obv not guarantees), it might not take you too long to conceive.

Don't know if any of that has helped. But if I can be of any help at all please feel free to either reply here or pm me xx

Hi wkmmum, thanks for your reply, it does indeed help! Great news on your pregnancy, hope you're proving the feeling-well-whilst-pregnant-plus MS concept .
I have charted my cycle since the beginning of the year, I feared it might make me incredibly fixated on my fertility before me and DP have got this straightened out, so it's nice to hear someone else suggest it!
I am lucky to have friends and family around, although there have been no babies so far, so it'd be a whole new chapter for everyone. DP has been open to the fact I'd look to draught in extra support, but I think it's irreparable damage he's envisioning as a direct result of having a child, whereas I'm generally more 'can-do' about everything and the crux of it is - I want to be a mother and him be the father .
But, y'know, I'll persist!

I'll let you know about the feeling-well-whilst-pregnant-plus-MS! Right now I'm at the can't-keep-anything-down-cos-of-morning-sickness stage :(

www.mssociety.org.uk/what-is-ms/womens-health/pregnancy-and-birth

Don't know if the above link will help but if you read down a bit it says that in the long run MS has no effect on long-term disability.

I know what you mean though - I'm the same. I'm very much 'I have MS but that's not going to stop me doing what I want in life' xx

Super - "in the long run MS has no effect on long-term disability."

I'll print this out and offer it when he's feeling receptive .

Thanks!

Sorry - just realised I didn't say the right!

What I meant to say is that in the long run pregnancy has no effect on long term disability from MS. Does that make sense? xx

heh - I totally got your intended meaning... tbh I had to reread your most recent post to spot what was wrong! (isn't the brain great at 'getting' meaning from context!)

So, yeah, the ultimate progression of my MS will go along as it will, and pregnancy is not expected to change/re-route/worsen that. Brill!

Hi you two,
Can I join your thread? Like you said, my neurologist told me that pregnancy was a very protective state and that the time to watch would be after the birth. He also didnt want me to start on any of the DMTs if I was considering any more children. I'm 36 and dont know how long you would have to stop taking them for before getting pregnant, so maybe thats why, but he pretty much told me that if I wanted more children I'd have to have them before I started taking DMTs. It was a hard decision to make really (either have another baby NOW or not at all) and one I had been putting off thinking I still had a while to decide, but in the end came to the conclusion that I have two lovely little boys and was probably better for me just to crack on with the DMTs.
Good luck and enjoy your pregnancies :)

You could discuss with your neurologist/MS nurse about the possibility of staying on treatment until you get a positive pregnancy test rather than having a washout period and then being off treatment for potentially quite a while whilst ttc.. Standard DMTs not associated with birth defects, slightly higher risk of low birth weight or miscarriage if continued during pregnancy. But they can't be restarted whilst breastfeeding.

Reviving this rather old thread as I've only just seen it - have been rather tied up with DS1 and DS2 who are 3.11 and 4 months old. I was dxed in 2005. We made the decision to have children and to hell with the MS. Having said that, I would note that I'm not as yet on DMTs and have been let off fairly lightly as far as symptoms/relapses go. I would say that the decision to have children has been a good one for us is so many ways. As far as impact on my health goes, I think it has been positive and the research supports this. Studies have found pregnancy to either have no effect here or even a positive one here.

As far wash-out, I imagine anyone ttc will want to be very sure they're not risking their baby's health, but it seems you don't need to wait long

I think there are complex (and depressing) issues around how much support you will have, whether your DP/DH is willing to take on much of the child care if needed, what happens practically and financially if you have a serious relapse when your children are young, how do you feel about the possibility your children may become young carers one day etc. But then there are also, sadly, many women ttc today in blissful ignorance of the fact that they will get dxed with cancer at a young age,or paralysed in an accident or even dxed with ms or some other crap degenerative disabling condition. At least knowing what we have, we can try to plan for it.

Good luck to forcookssake and anyone else in her position. And don't forget to take your vitamin d!

Thank you UniPsychle, I read your comments and the links with great interest. I don't have anybody in RL in my position, so hearing positive examples like yours is really useful.
My partner and I are at the same impasse as when I first posted, meanwhile I'm taking my supplements and continue to work it out...

Just seen this message - I am 40 - been diagnosed 10 years and have a 5 year old son. Happy to talk to anyone on the phone (not sure how this works online) My problem was being too safe - came off all meds and then last of all came off pill and waited three months (MAD!) and then my periods went haywire. Took me a year to get pregnant as my cycle was so erratic! Pregnancy was stressful (not down to MS - although some visual disturbances) and managed to get through first year without relapse (despite again incredible life stress - not MS related) Was hard - really hard as fatigue and balance/bladder are my main problems. Happy to talk by phone (less tiring) My son brings so much joy - and I have lots of strategies for coping. You will need lots of support - friends/family but if you really really want it then go for it - and soon - and don't 'wait for the 'right' time' - even without MS most people struggle with work not enough money etc... and if you have support then it's possible and wonderful (although I do struggle at times - but I think all mums do)

I'm not sure I'll be much help. But like OP said MS symptoms are supposed to be better during pregnancy. I got diagnosed last year and had DD three weeks ago. My pregnancy was largely MS symptom free which was lovely. I have planned what will happen if I were to have a relapse imminently. Explain to DP that whilst MS is something to consider when ttc its just another factor to take into account and not the deciding factor when ttc. My MS nurse has suggested a new drug to me but can't remember what it's called. This new drug only needs to be stopped one month before pregnancy and she was recommending it to her ladies that are wanting to ttc. Can you have a discussion with your DP and MS nurse together about this? I did this with DH when I was pregnant so that he could ask MS nurse questions. Good luck xx