I was told 4 weeks ago by a neurologist that I had ms. I have been suffering with tingling all over my body but nothing more serious yet. i have two small lesions on my brain and a possible tiny one on my spine. Unfortunately he isn’t an ms specialist so I have to now wait to see one. He said I’d be waiting at least 3 months. So here’s my dilemma. I have a little boy of 9 months and we were hoping to start trying for another baby this autumn. Now I have no idea what to do. Am I best trying now before any medication begins? Or waiting to see the specialist and starting medication then delaying trying for another baby. Or maybe even making the decision to not have another. I know no one can tell me what to do but would really appreciate any thoughts/advice.
Don’t rush anything at this stage. Even after you’ve seen the MS specialist, you may not be entitled to any drugs. Even if you are, there can be a LONG wait to get started! I was dx’d last April and won’t get any drugs at this stage as my relapses have not been ‘disabling’ or required any steroids. I’ve basically got to wait until I have two ‘big’ relapses before I can get anything. I can’t tell you what I do, but if it were me I’d just carry on with the plans I’d made as best as I could! It’s only a few months 'til autumn anyway! (PS I have 22 months between my children and it is a lovely age gap, especially now they’re 5 & 3 and can play together!) Take care x
Thank you so much for your response. Interesting what you say about drugs. My relapses have been extremely mild so maybe I won’t get any either. Guess I’m just in shock at the minute and panicking about all the unknowns. I don’t even feel ill, so it doesn’t really feel real. Thanks for the reassurance x
I’m pretty sure that it’s a standard thing that you must have had two disabling relapses to get drugs - that means requiring steroids or a hospital stay in my area. My relapses have been very mild compared to some people - eyesight problems and sensory issues (numb and tingling legs, numb fingers). The worst relapse I had affected my speech and made me sound a bit drunk!!! So basically nothing I couldn’t deal with, and they all cleared up on their own within a few weeks. It’s very hard - you don’t know how your next relapse will affect you but you shouldn’t let it stop you doing what you want! I was paranoid about booking holidays etc. but we went abroad last year and it was fine, so we’ve booked to go away again this summer. I think having children helps a lot as you have to keep going as best as possible - they just won’t let you take to your bed for a day (I wish!). I’ve heard that people tend to have less MS problems during pregnancy, but are at risk of a relapse soon after childbirth. But given the zombie-state sleep deprivation I’m not sure I would be able to tell the difference anyway!!! Take care x
If I were you, I’d keep trying for a baby. You have to come off DMDs if you are pregnant, but pregnancy itself is protective against MS so there’s little point in waiting, even if you were eligible for DMDs.
Karen x
Thank you so much for your replies x
I have to agree with Karen keep trying. You can’t put your life on hold because of MS, I have two children aged 2 and 6 and I wouldn’t be without them, ok they are hard work but they would still be hard work even if I didn’t have MS. Live for now and don’t worry about something that may or may not happen in the future thats my motto.
Good luck
Claire
Hi I am also in the same predicament as you. I wanted to have another child approx a year after my first but I had a relapse 9 months after my little boy was born and I decided to wait until I was managing my symptoms before trying for another one…almost four years on…I saw my neurologist last week who asked me if I was thinking about having another child and I explained to him that I was concerned with having a new baby and managing my symptoms plus the risk of having a relapse after pregnancy and I felt that I didn’t want to take tat risk however he said I should re think as pregnancy has a negative effect o pregnancy. I am now going to look into it more and hopefully I will have the confidence to have another child. If my neurologist is encouraging it then I think its a good sign!. Hope this helps a little
If I was you I’d go for it…I’ve a three year old and would have loved a another, wish I’d tried sooner though as unfortunately following my last relapse I’ve been left with some problems with my walking. For me I want to be aswell as I can for my family now and as I’ve gone downhill I have now made the decision not to have anymore. However if I was like you I probably would go for it. No reason it to hun…good luck with it. Xxx P.s I had sensory symptoms for the first seven years its only since last November its affected me physically. Oh and have to say I nearly died having my boy so a lot also think I should stick to one in case it happens again!
I’ve been posting about estriol, a hormone your body only makes in the last 3 months of pregnancy. One of the interesting stats I came across is that a longitudinal study looking at women with MS found it took 18 years for those who gave birth after diagnosis to need a wheelchair (on average). It took 12 years, on average, for those who didn’t give birth. Sort of encouraging and depressing at the same time I think. I just wanted to say there can be some upsides for your disease from having a child, so if you want one you should go ahead.
You say you were told that you had MS or did you mean you were told they think you have MS or do you have a confirmed diagnosis as I understand you have to have a second attack before they can officially confirm MS? (not questioning you but am still trying to understand all the jargon myself!)
I also have a 9 month old girl and my symptoms started just before she was 8 months old and it makes me wonder if this is a common time after having a baby for symptoms to appear or just coincidence? If yours started earlier, when did you first start noticing symptoms?
Thanks so much for everyone’s responses. Tricky123, I first had symptoms about 2 months before I got pregnant. Then they flared up again when he was 7 months. It’s just tingling in various parts. Because I’ve had 2 cases the neurologist told me it was ms but in the referral letter he did state that the likely cause was ms. So I’m assuming its a definate diagnosis but from everything Ive read it does feel a bit sudden. So I’m waiting to see the specialist before I believe it fully. Denial I guess!! I have read that it is common for first ms symptoms to show up after pregnancy?!