Forum

Feeling petrified

Hi all I read these forums all the time but never really post very often. I am pregnant and went for my 12 week scan yesterday which was just magical. Then today I had an appointment with an obstetrician but as it turned out I ended up seeing both and obstetrician and a neurologist. They asked me to start at the beginning of how my MS was diagnosed. I feel so upset at having to relive the whole sorry affair. My MS started with a bad bout of transverse myelitis which came back again then I had optic neuritis, so 3 bad attacks in the space of 18 months. The obstetrician then piped up and said “your disease is obviously quite severe”. To be honest that just what I DON’T need to hear. Sitting there 12 weeks pregnant and already scared. Needless to say I never made it into work today as I was just so upset and cried the whole way home on the bus. I guess what I want is some support from other young mums or mums to be that it’s manageable to have this disease and look after a baby. I feel so scared and don’t know what I’m letting myself in for. Look forward to hearing from anyone soon. Lisa zzz

hi lisa

first of all - what unfortunate wording the obstetrician used.

i know some young mums who manage well but obviously everyone is different.

its a shame that it took the shine of your magical scan.

you obviously want this baby and in your shoes i’d go ahead with it.

courage young lady!

carole x

I’m not a mum or mum to be but read your post and can’t believe that they treated you like that. From what I’ve read in here ms normally behaves better during pregnancy so hope you’re finding that you’re feeling a bit better. Hugs - hopefully this will bump you up and someone that is a mum or mum to be can give you helpful advice.

My sister-in-law has quite a badly curved spine and was told she would struggle with pregnancy and should avoid it - 2 sons now and she’s certainly in no worse shape for it. Another friend with Crohns was terrified she’d have a bout of that whilst pregnant and she carried just fine.

I cheated and got a pre-made one :wink: I’m a step-mother :slight_smile: I know the only time I was worried about my chances of motherhood was when I thought the chance might be taken away. I think we all want some control over our own destiny :slight_smile:

Carole and Karina have given you sound advice and if we all worried about the worst that could happen, we’d never leave the house in the morning!

Good luck Lisa, I hope your pregnancy is as hassle-free as possible

Sonia x

Thank you everyone for your kind advice xx

Hiya

I’m so sorry you’ve been left feeling so rubbish on what should be an exciting day. I’m not a mum so I can’t say too much about what it’s like having MS and having a child but I do know what it’s like for a doctor to say you have severe MS. When I was diagnosed I had 4 relapses in 6 months, my neuro said ’ well you’ve obviously got very severe MS, so we need to start you on DMD’s.’ I was devastated by him saying this. I had managed so well up to that point and it seemed like the end of the world. However when I sat down and thought about it, I knew I had severe MS as I was relapsing all the time, and from what I’d been told and read, this wasn’t the ‘norm’ but it didn’t actually make any difference to me.

My neuro even said to me that one of the best things I could do would be to have a baby as when you’re pregnant, you don’t tend to relapse and even though you may have one once you’ve had the baby, they are there to support you, get you on DMDs and give steroids if needed, so you can get over it quickly.

So my point is, compared to me you don’t have severe MS, but to someone that only has a relapse once every few years, you probably do. My personal opinion is that if YOU’RE getting on o.k. then someone saying ‘you’ve got severe MS’ or ‘you’ve got mild MS’ makes no difference to anything.

Please try your best to think of your lovely little baby, growing inside you. You WILL be fine once your baby arrives, because you have to be. Whatever comes your way, you’ll deal with and be a fab mummy.

Good Luck

Sue

x

Dont be scared.the obstetrician was out of order saying that your ms is severe,how does he know ?

i got pregnant 4 months after my diagnosis

like you i was very scared for the future,i needent have been, i went on to give birth with no pain relief,and even though i had a nasty relapse,when my ‘little one’ was 6 weeks old, i am here to tell the tale,and am now a grandma to a beautiful 6 month old baby girl,

enjoy your pregnancy because, before you know it, your baby will be all grown up.

Your first symptoms were the same as mine, transverse myelitis and optic neuritis within about 18 months. I then didn’t relapse again for nearly 11 years (and I wasn’t on DMDs or anything during that time - actually were they even available then??). Anyway, it’s only recently that I’ve started relapses again and am now on injections and my daughters are now 8 and 10 (had them after my first two relapses).

So what I am saying really is, they really can’t know for sure what will happen and neither can you. So please don’t let this spoil your pregnancy, it’s an exciting time.

Thank you everyone and thank you Zedsee. Your words are encouraging and have given me some hope. I do hope your keeping ok. Lisa xx

Hi Lisa, I have had ms for at least 6 years.I was diagnosed 3 years ago.I was pregnant while I had ms and have a healthy little boy.Try not to worry I know it is easier said than done.Just try and enjoy your pregnancy. Take Care x

Hi Lisa,

I was told at my last appointment that my MS was very “active” despite me being on DMDs for the last 7 months. It is disheartening but it’s also important to be realistic. Look at the positive side too. They are taking you and your MS seriously. So many people are dismissed and ignored and left to suffer. They are trying to look after you and deal with your illness. OK, so the bedside manner might need a bit of work but truthfully, I’d rather a blunt pro-active approach than a nice but dismissive one.

Plenty of people manage just fine being parents with MS. I’m a single parent to one child and hold down a full time job. Her father isn’t involved at all so I am parenting alone. My parents have only recently moved an hour from me which is great. Before that they were 4 hours away.

It’s definitely do-able. Rather than looking at their inquisitiveness about the MS as a negative, see it as positive. They know. And they care about what is happening to you and what will happen after the pregnancy. They are planning ahead and that is a good thing as the more pro-active they are about your treatment, the less relapses you will have and the better you will be physically able to parent your baby.

Hi Lisa,

I was told at my last appointment that my MS was very “active” despite me being on DMDs for the last 7 months. It is disheartening but it’s also important to be realistic. Look at the positive side too. They are taking you and your MS seriously. So many people are dismissed and ignored and left to suffer. They are trying to look after you and deal with your illness. OK, so the bedside manner might need a bit of work but truthfully, I’d rather a blunt pro-active approach than a nice but dismissive one.

Plenty of people manage just fine being parents with MS. I’m a single parent to one child and hold down a full time job. Her father isn’t involved at all so I am parenting alone. My parents have only recently moved an hour from me which is great. Before that they were 4 hours away.

It’s definitely do-able. Rather than looking at their inquisitiveness about the MS as a negative, see it as positive. They know. And they care about what is happening to you and what will happen after the pregnancy. They are planning ahead and that is a good thing as the more pro-active they are about your treatment, the less relapses you will have and the better you will be physically able to parent your baby.

Hi Lisa,

I was told at my last appointment that my MS was very “active” despite me being on DMDs for the last 7 months. It is disheartening but it’s also important to be realistic. Look at the positive side too. They are taking you and your MS seriously. So many people are dismissed and ignored and left to suffer. They are trying to look after you and deal with your illness. OK, so the bedside manner might need a bit of work but truthfully, I’d rather a blunt pro-active approach than a nice but dismissive one.

Plenty of people manage just fine being parents with MS. I’m a single parent to one child and hold down a full time job. Her father isn’t involved at all so I am parenting alone. My parents have only recently moved an hour from me which is great. Before that they were 4 hours away.

It’s definitely do-able. Rather than looking at their inquisitiveness about the MS as a negative, see it as positive. They know. And they care about what is happening to you and what will happen after the pregnancy. They are planning ahead and that is a good thing as the more pro-active they are about your treatment, the less relapses you will have and the better you will be physically able to parent your baby.

This should be a ‘happy time’ - so do make the most of it. My MS started when l became pregnant - a very frightening time as l was 35 yrs old. That was 31 yrs ago. l coped with the help of some good friends/neighbours and with a new baby had no time to worry too much about my own health. The best thing you can do is make sure you are taking a high dose Vitamin d3 - magnesium and of course B12. Along with extra iron supplement.

l am sure my MS was attributed to a very low D3 count - and l wished back then l knew about the importance of D3. The growing baby needs all the help it can get - and you will.

Google Vitamin d3 deficiency and pregnancy - must be lots of info.

5yrs ago l did start taking 20.000ius daily - then 2yrs later 10,000ius daily. Every 6months l have a ‘test’ done and still my levels are on the low side 98nmols. l am aiming for 175nmols. This last few weeks of sunshine l hope will have boosted my levels - l certainly feel better for it.

Went out for dinner last night with my lovely daughter and some friends as it was my birthday. She is such good company and gets on so well with everyone of all ages - and l have never regretted having her. The MS - did however - prevent me from having anymore children. l really did not think l could manage to look after myself and two children.

Hi Lisa

What an inappropriate thing for an obstetrician to say, it is not her specialist field and he/she had no right to say it. It’s possible that the neuro wasn’t happy with her for saying that but couldn’t say so while you were still there.

I had 2 relapses in the first 3 months and my neuro still said I had ‘mild’ RRMS whilst in the same breath telling me I had had two significant relapses and needed to start DMDs asap. I didn’t think that made sense but appreciated the positive spin he was putting on it. Mental attitude helps a lot with this illness.

I had a further relapse in that year but then went for three and a half years before my next relapse so there is every chance that your MS will settle down. I’m sure I have read other stories on these boards where someone’s MS is very active in the first year or so and then calms down for several years.

As for MS and babies, I know of several mothers on these boards with babies and young children and they do manage to take care of their children. Of course, it would be a good idea to make sure that you have lots of support in place so you can take a well-earned rest every now and then but every new mother should be thinking along those lines and not just those with chronic conditions.

Enjoy the rest of your pregnancy and have fun choosing baby clothes, names etc. Best wishes for the rest of your term, I look forward to hearing about your special delivery at a later date

Tracey x

Just bumping this up to see if I can get any more comments x

I just came back for a look, just goes to show that lots of people DO have babies despite MS :slight_smile: I hope you’re feeling happier again now…

Sonia x