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Calling ladies who have experience in being pregnant with MS!!!

Hi Everyone,

I recently came off Gilenya so myself and my hubbie could start trying to a baby. I came off it with the support of neuro on the 9th April, had my 2 month wash out period and we started trying. A month ago I got very bad ON and ended up in hospital. NOT what I wanted!

When I mailed my MS nurse to say I was relapsing and was looking to come in for treatment she replied and said wait a few days, could be infection or you could be pregnant, could be causing the ON. At the time I wasn’t very impressed. Im 10 years on and know when im having a fully blown relapse but I went to GP all the same, got a urine test, checked temp etc and no infection. Was too early in cycle to check for pregnancy so I went to A&E and spent 5 days there on the usual IV steriod. Needless to say I wasnt pregnant when they did the bloody tests. Took another 3 weeks to improve but eyes are almost 100% again. I got really down, was 3 years since I had such a bad relapse, I had forgotten how much it effects you at the time and for sometime later in regard to confidence, drive etc.

Anyway, I now have these intermittent pins and needles all over my body. My face has definatly lost sensation and gettting pins and needle not only is places Ive had them before (offinoffs or what ever you call it!!!) but in places ive never had before. But is seems to be intermittent. I don’t have a temperature or anything and I am wondering, could I be pregnant.

I thought MS’ers were at their best during pregnancy but something in MS nurse’s mail about it being the cause of last relapse is making me think. Im a week away from period so cant do any kind of test but cant stop my mind from wondering…could there be a baby!!! :slight_smile:

Any of you ladies who have had babies since your DX have similar symptoms or am I barking up the wring tree?!!

Thanks a million

Susie

I had two children after diagnosis. I never had pins and needles that I noticed during pregnancy but my walking was a bit worse, and that’s generally where my MS shows itself. To tell the truth, I have the idea that later in pregnancy you would be somewhat protected against relapses but not very early. Are you in danger of rebound relapses from comiing off the Gilenya, do you know?

Hiya

I’m having my 2nd baby since diagnosis. I’m 7 months pregnant now and have had 4 relapses since march. I have a 9 month old and when i was pregnant with him last year had no relapses at all. So it just goes to show that everyone and every pregnancy is different.

I get the feeling though that being pregnant has helped me get over my relapses quicker. I had ON at the end of july and my eyesight was restored after 3 weeks. Unfortunately my eyesight is still blurry after my april relapse so I can’t drive :frowning:

2 of my relapses while pregnant have involved numbness etc but I’ve also had these symptoms in earlier relapses while not pregnant

Thanks everyone. Im so confused, I though that we were supposed to feel great if pregnant. When I came off DMD’s I was told to get pregnant as soon as possible after wash out to protect myself.

Now either on second relapse or im pregnant and thats whats bringing on symtoms. Have a 2oC raise in temperature. My gums are bleeding when I brush my teeth, im convinced im having implantation cramps but of course all of these are just symptoms to period too!!!

I really hope its pregnancy, I can cope with it all if it is. If not what do you do? Forget having a child and go back on DMD’s? Or risk more relapses and a change of progression?

Oh defo Id say. I had alemtuzemab (campath) a few years ago. They only gave me one dose as my platlet went really low but 14 months later started to relapse. Before that was on tysabri for a few months, again had reaction so they took me off it, one out of my system started to relapse. I guess immune system boot back up with vengeance!

You may be able to tell if you’re pregnant - tests are so sensitive now that they sometimes give a positive result as soon ss the embryo implants, which happens before you miss your period. Don’t be too down if you get a negative result however, because it could still be that you will get the blue line a bit later on.

I just wanted to say that getting pregnant is risky if you have MS, at least in the short term. I have read stuff suggesting that, on average, women have better long-term outcomes if they have children. But that’s on average - you personally may not get any relapses while you’re pregnant, you may get one or more bad ones after you give birth, your MS may be better or worse as a result of pregnancy (and sleepless nights after the baby is born). Having a child is a big thing but it is not everything in life. If you decide to have a child and succeed in getting pregnant, one day your child will grow up and you will (hopefully) make a fulfilling life for yourself. Whether to have children or not is a very important question for everyone - there are health questions for people with MS that most other people don’t have to worry about but everyone who is trying to have a child should be sure that is what they want with their life.

Sorry to preach, but the change from no children to having children is an unimaginably big one. There is huge pressure on women to have children but that is not the right thing for everyone.