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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

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Original poster

Does any other Mums on here have Multiple Sclerosis?

25 replies

wibblela · 30/10/2009 10:53

Hi,

Just wondering, does anyone else on here have MS? This is my first pregnancy and I am quite keen to hear from women who have MS and have had a baby. What was it like? How was your MS? Was your delivery "normal"? Etc Etc...

Cheers

OP posts:

popsycal · 30/10/2009 10:55

there are a couple of mums onthe running thread who do. will give htemthe heads up

sarah293 · 30/10/2009 10:55

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nicnacinoonoo · 30/10/2009 11:05

sorry cant much help on the pregnancy and birth front but just want to say my dad has ms. he is 62 now he's had it since before he married my mum when they were late 20's i think. he has used a scooter most of my life (23) although i vaguely remember him walking short distances when i was young. he still drives (with hand controls) and i can honestly say i have never thought of my dad as any different from anybody elses except that my dad is the best in the world
he's now a grandad and my ds (3) adores him too especially when he gets to go for rides on grandads knee

hatwoman · 30/10/2009 13:28

Hi wibbela, I have MS, but these days almost feel like a fraud saying it as I'm so well. I was diagnosed in 2000 when pg with DD1 - birth was horrendous but that had nothing to do with the MS.I've since had dd2 (birth was, erm, interesting - at home delivered by dh) but again, nothing to do with ms.

How is your ms in general? I had ON and trigeminal neuralgia and was really pretty ill for about 8 weeks when pg. since then I've only really had one relapse - really bad stiffness and pain in my leg. plus lots of stupid things that I've learned to ignore. second pregancy had no problems at all. and now am very well.

Original poster

wibblela · 30/10/2009 16:32

It's reassuring to find other women who have gone through this as well - I was beginning to feel like I was the only one, which is really stupid!

My MS is good and bad. I use two sticks to be mobile when I have to, and am very stubborn about not using my wheelchair. Although I do use an electric scooter when am out shopping - it's far too important to have mobility problems to hinder it I have almost constant pain in my legs and head, which has got more since the doc took me off all my pain meds when I found I was pregnant Am assaulted by other niggles as well, but I have learnt to ignore them. Continence is also an issue, especially during pregnancy when you need to go more anyway - alas doc has taken me off meds for that as well

Fatigue is always an issue, and being pregnant I feel even more tired!

All that said I am so pleased and happy to be pregnant

OP posts:

sarah293 · 30/10/2009 18:36

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hatwoman · 30/10/2009 18:53

Riven - I didn;t know you had MS...I knew (I think) you sometimes used a wheelchair but I didn;t know why.

girlsyearapart · 30/10/2009 18:56

Yes I do.

Found pregnancy best time in terms of symptoms.

Birth of dd1 got too tired and had to have ventouse and episiotomy.

Couldn't keep up with the breastfeeding for more than a few weeks though as just too tired but others have managed it.

Just be realistic and accept help when it's given!

sarah293 · 30/10/2009 19:04

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girlsyearapart · 30/10/2009 19:10

Didn't see you hat sorry. Waving at you too.

Have had kidney infection for about ten days now so no running.. Can you tell I haven't been out much?

Riven about you being upped to Secondary progressive. Does it affect benefits/meds?

sarah293 · 30/10/2009 19:11

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popsycal · 30/10/2009 19:51

glad my running gals found you.

I also know of another recently dignosed friend with MS who is the same age as me.

hatwoman · 30/10/2009 22:14

just coming up to 10 years for me too - diagnosed 20/12/99 (my mum's birthday). but thankfully so far I think it would be called benign - not even r-r. always the fear that it could get worse but I keep my head firmly in the sand on that one...sorry to hear you're having a harder time.

sarah293 · 31/10/2009 09:09

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girlsyearapart · 31/10/2009 09:18

Know how you feel Riven though I'm not as bad as you day to day when I have a relapse it particularly affects my right arm/hand.

Happened for ages the other day as already run down and poorly and had really wanted to wash my hair. Asked DH to do it but he said 'No wait until tomorrow just get some sleep.'

Worse than asking for help (horrible in itself) is being refused!

He is a very lovely H in general but has a shaved head and doesn't get it that it would've made me feel better to have properly washed hair. Grr.

sarah293 · 31/10/2009 09:26

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girlsyearapart · 31/10/2009 13:06

You're NOT a bad Mum Riven. Don't be a silly billy you're an inspiration. We all do what we need to get through this. You didn't choose it you're a victim of circumstance.

Sounds like you're doing the best you can which is more than can be said for some.

Original poster

wibblela · 02/11/2009 20:53

It has been an inspiration to read your stories, and Riven yours really tugged at my heart strings. Lovey, you are amazing to be as strong as you are, to give love and help to all your kids and to us. Your DH is very blessed. I know that you are with him as well, my DH is a star as well. He is my FT carer, and I suspect will take the major role in looking after the new addition as well.

I was diagnosed in June 2003, and thank God despite things going downhill it is much better now. Riven, have you tried Pregabalin instead of Gabapentin? I moved from Carbamazapine to Gabapentin to Pregabalin. The not nice part was weaning off Gabapentin to go on Pregabalin, but it was most definitely worth it. I felt more alive and with it when I was taking Pregabalin, the fatigue wasn't as prevalent, the pain was less and my guts definitely preferred it (c:

OP posts:

ziggyf · 03/11/2009 15:12

I hope you don't mind me butting in? It's so good to see a thread for mum's or mums-to-be with MS!

My wonderful, amazing sister had PPMS and her and her DH would dearly love to have a baby. She (and the rest of the family) is concerned about how she will cope when the baby arrives. She has some mobility problems, although she doesn't use a wheelchair yet. She uses a stick when she's out by herself and an elbow when she's with someone. Her main problem though is awful fatigue. How do you cope with looking after a little one when the fatigue strikes? At the moment she goes home and sleeps or rests but obviously she won't be able to do that when she has a baby or a toddler!

Also, it would be great to know what sort of help she could expect to receive if she did have a baby? Someone mentioned a PA(?) for when they take their child out and about? Would she be able to get help with bathing the baby and getting it ready for bed? Her DH is great but he works in London and doesn't generally get home until 8 o'clock.

I'm planning to move closer to my sis (if we can ever sell our house!) and my mum will help out as much as she can but my sister is fiercly independent and it would be great to be able to give her some reassurance and information about how she will be able to care for a child if and when they decide to take the plunge.

I'm sorry for hijacking the thread, I really appreciate any advice you may be able to give us!
Ziggy xx

ziggyf · 03/11/2009 15:13

btw - congratulations on your pg wibblela!

Original poster

wibblela · 03/11/2009 17:37

Ziggyf - your sister sounds like me!!! My family are also concerned about how we will cope when we have little one. I'm very blessed because my DH is also my FT carer so he will be around when baby is. From what I understand - coz I am going to do the same thing if I need to - she can be assessed again to see what further help she will need when baby is around. One of my big problems is fatigue as well!!! My friend has just agreed to help me with the housework. Does she need a carer already?

OP posts:

ziggyf · 04/11/2009 11:05

Hi wibblela,

No, she doesn't need a carer at the moment. She really could do with help around the house but she's too independent to take it! She gets DLA and I'm always on at her to get a cleaner in but she won't do it. To be honest, she is a complete inspiration to me she is such a fighter But it is sooooo frustrating when I see her completely exhausted because she's spent 2 hours cleaning the house!

Anyway, she would definitely need help if she had a baby - it's the practical things that I wonder about. Like, how will she get baby from one room to the other? And how will she bath the baby? And how will she get the baby into the carseat and the carseat into the car? There must be ways because a lot of people do it but I don't know where to find the info. And, what happens if she needs to rest and the baby doesn't want to sleep? I have this problem a lot (I have a 2yo son) - I'm knackered and I don't have MS!

I hope you don't mind me asking, I'm not trying to worry you I'm just so relieved to find other people who might be able to give me some advice so that I can allay the worries of her and the whole family and give her some practical advice. Do you know who would do the assessment to see if she qualifies for more help? Would she pay for the help out of her DLA or would it be on top of that?

Thank you thank you thank you for replying and massive apologies if I've upset or worried anyone
Z xx

keresley · 05/01/2010 20:07

Just wanted to say that I was diagnosed with MS a month ago. I have a 5 and 2 year old and am currently off of work recovering from this first episode (which saw me staying in hosp for 14 days). Do you always get DLA if you have MS. My MS nurse says most people with MS don't get it.

ziggyf · 05/01/2010 20:21

Hi keresley,

How bizarre you bumped this post today, I was planning on looking for it tomorrow as my sis has just told me she's expecting!

Anyway, I can't speak for anyone except my sis but she gets full DLA. She has a very supportive gp though and I think that definitely helps. The forms were a bit of a nightmare but well worth doing.

HTH
Z x

Original poster

wibblela · 05/01/2010 20:28

Hi keresley - sorry to hear about your diagnosis, although it has probably made a lot more sense of what has been going on.

As far as DLA concerned, it depends on how the MS is affecting your life. The DSS is more understanding about MS these days, and it is wise to apply. However discuss things with your MS consultant first. I seem to remember there was a time limit between applications but I can't be sure. DLA (as you probably know) is split into two areas - mobility and personal care. Initially I was the highest rate of mobility and the medium rate of personal care although that has now changed to the highest rate for both. As the name suggests you need to have a level of disability.

I take it you are still at work? Do they know? It is illegal to do so, but make sure they don't discriminate against you because of your MS. Also it may be worth being in touch with your Occupational Health to make sure that you get alll that you can work wise.

Remember stress is not good for MS! Do they have any idea yet which level of MS you have?

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