postpartum relapse stats

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postpartum relapse stats

Postby MrsGeorge » Tue Nov 03, 2009 6:48 am

Am trying to find some - the bleaker the better. can anyone help?
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Postby LR1234 » Tue Nov 03, 2009 7:25 am

I have also been looking into this as I am thinking of having a baby in the near future and am so worried it will make my MS worse. I am planning of having the CCSVI procedure and I am going to ask for IVIg treatment in the post partum period.

So are you pregnant Mrs George?

If so hows it all going?

What Edss are you and how many relapses did you have pre-pregnancy?
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Postby MrsGeorge » Tue Nov 03, 2009 8:17 am

Hi

I am 11weeks & 2 days, next scan on monday! Doing well and so far symptoms have cleared up a lot after my last relapse.

Hate to sound like an MS idiot but Edss?

I tend to average about 3 relapses a year but the last one was pretty bad and really affected my walking, I had to use a chair for about 6 weeks and still do if out and about lots. At the moment I am preparing myself for the worst just in case.

The reason I am trying to get the stats is to support my request to be rehomed into a bungalow or ground floor flat before the baby is born.
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Postby LR1234 » Tue Nov 03, 2009 9:44 am

EDSS is the disability score (although it really doesn't stand for much as it is only relating to mobility and as you know MS has so many non-mobility issues)

I would ask for a ground floor place regardless of whether you get the stats. You have a good case to be able to have your life made easier.

I am pleased to hear a lot of your symptoms have eased off, I am hoping when I do finally have a baby and have the CCSVI procedure all my symptoms will go (wishful thinking I know)
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Postby hlm286 » Tue Nov 03, 2009 5:07 pm

There was a good article on here awhile ago, I think it's even on the MS Society's research page, about breastfeeding showing reduced risks of postpartum relapses. I breastfed my daughter until she was 10 months old and oddly enough have connected the dates to when my symptoms started to the same month I completely weaned her. (I was diagnosed with a major relapse 5 months later). Anyhow, I haven't started any DMT drugs because the MS specialists suggested waiting until I'm done having children, and now I'm about 8 weeks pregnant and my plan for postpartum is breastfeeding and trying to manage my stress and eat healthy and hope this helps. You never know but it doesn't hurt to hope! :D
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Postby MrsGeorge » Wed Nov 04, 2009 1:40 am

I am definitely planning on breastfeeding! I don't know about having more children. I did used to want a big family but I am going to wait and see how I cope with this one!
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Postby JenniferF » Wed Nov 04, 2009 10:43 am

MrsGeorge wrote:I am definitely planning on breastfeeding! I don't know about having more children. I did used to want a big family but I am going to wait and see how I cope with this one!


Ya know, if you're clever about how you do it, you could keep yourself pregnant and/or breastfeeding continuously from now until menopause ;-). If it staves off relapses for you [I know results vary], I couldn't think of a treatment with better side effects.

Jen <-- just being mischievous today.
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Postby MrsGeorge » Wed Nov 04, 2009 2:01 pm

Brilliant idea - I'll run it past Adam!
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my postpartum flare

Postby roadaction13 » Sat Jan 15, 2011 12:58 pm

i think the stats are something like 80% chance of postpartum flare in first 6 months, 30% if breastfeeding.

I breastfed, ate healthy, all of that - and had a bad flare (for me, having only had flares with sensory symptoms before) with a lot of pain, trouble walking, weakness, tremors, swallowing problems, etc.

After 3 rounds of IV steroids, one not-helpful week of IVIG infusions, and now my 6th round of tysabri, things are at bay (and I get my 6 month MRI at end of month so we'll see what's up in there.

BUT i'm sad to say i have what's likely permanent peripheral neuropathy in my feet and most of my legs : (

HOWEVER. I would NOT go back and change things because now I have my wonderful year-old vibrantly healthy child. I WOULD however, look at what they are doing in Brazil as far as post-partum steroid treatment as their relapse rates seem to be lower (saw that posted elsewhere in these forums)...

JD
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Having babies really affected me

Postby SleepingBeauty » Sun Jan 30, 2011 9:12 pm

Hello,

I just wanted to share my experience with postpartum relapses.
In 2008 I became pregnant with my 1st child. I was 21 when she was born. I didn't know at the time that I had MS. I was really tired all the time and blamed it on the fact that I was awake all night most nights.

*When she was 2 months old I had my first relapse. Half of my face went numb. That relapse went away within 3 weeks.
*Then my second relapse hit-the other side of my face went numb for 3 weeks. I still was not diagnosed and blamed it on other things.
*When my baby was 4 months I had my 3rd relapse-I was so dizzy I could not get out of bed and half of my face went numb yet again that cleared within 2 weeks.
*When she turned 5 months I lost the use of my right arm. I finally regained the use of my arm when my daughter turned 7 months and my doctor decided to send me for an MRI. I finally had the MRI done when my daughter was 13 months old. By this time I was feeling wonderful-the best I've ever felt-so my husband and I decided we wanted another child (still not knowing I had ms)
We got the results of my MRI on the same day we found out I was pregnant with my 2nd daughter. Jessi is now 10 months old.
*While giving birth to her I started another relapse-I went numb from the neck down. I have had issues with my bladder and bowel, major fatigue, trouble sleeping, my right hand is still numb and I have l'hermittes.
*I had my biggest relapse of all when she turned 5 months (This September). I lost the use of my left side. I am just now almost 'better'. I am stuck with a super weak left side that is still all numb and a wicked tremor in my left hand.

I love my kids more than anything but having them took a lot out of me and I will never be the same. Sorry for the long post. I just see so many articles down playing the severity of relapses in some women after giving birth. I know that my MS is pretty aggressive-but it is definitely something to think about before deciding to start a family.

FYI- I had to stop breastfeeding both of my daughters when they were around 2 months old.
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