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Original poster

Multiple sclerosis & parenthood

29 replies

Verso · 05/03/2006 20:58

I've posted a few times, about other things, but tonight I'm just wondering whether anyone else out there has experience of MS? DH was diagnosed the year after we got married, and I sometimes (like now) find it difficult to deal with. He was very ill this w/e (quite a scary relapse - he fell down the stairs, is slurring his words very badly and can hardly walk, oh and was vomiting all over the place) and has now gone to hospital...

Feeling a bit helpless as I don't know what's happening with him (I'm at home with DD). Also v scared about the future. He hasn't had a relapse this bad for ages. :( (Quite glad he's at hospital, though, as he tends to put on a brave face but eventually allowed me to call the doctor when he had been sick all over our bed and couldn't move.)

Hope someone else knows what I'm talking about!

OP posts:
Original poster
Verso · 05/03/2006 20:59

Oh, I didn't really explain how this relates to the 'parenthood' of the title, did I? DD is 10 months, and we would both love another child one day, but I'm thinking that's possibly unrealistic, given the MS situation :(.

OP posts:
Twiglett · 05/03/2006 21:09

I'm sorry I have no experience of MS but didn't want to let your post pass without acknowledging your obvious pain Sad

My DH has a chronic condition that also comes and goes in flares and can be progressively debilitating (which is my understanding of MS .. hope I'm not mistaken) .. we have been lucky in that his current medication (for 2 years) seems to work very well

But I can appreciate your sense of grief and uncertainty .. all I can say is take every day at a time .. atm you're in a bad patch but this will pass .. allow yourself to feel the feelings you need (sometimes being a partner can be incredibly hard because one has these emotions tinged with immense guilt) .. fear is just one of the emotions one feels

I don't know if I'm waffling here .. maybe I should leave it for someone who knows better

but I'm thinking of you and happy to chat if you want

starlover · 05/03/2006 21:14

verso is your dh taking medication to control his MS at all?

I don't have direct experience but my best friend's stepdad has it and has got very bad over the past couple of years.

Blu · 05/03/2006 21:22

Verso - hello - sorry, I have nothing of use to offer, but wanted to acknowledge your post. So sorry that your DH has had to go into hospital.
I do know there is one Mumsnetter whose partner has a condition with things in common with MS - and I am sure she will be along soon - keep bumping this up, and i hope your DH will be back on form again very soon. Relapses must be very frightening for you both.

How old is your DD?

HappyMumof2 · 05/03/2006 21:22

I don't really have much experience, but my ds's dad has MS and has 4 children (including ds) How old is your dh?

Original poster
Verso · 05/03/2006 21:25

Thanks for your replies. Both very sweet and much appreciated.

No, DH isn't on any medication because his consultant thinks his MS is 'mild'... well up to now, anyway. He's currently on an anti-nausea tablet because he has a bad ear infection which the GP says is the reason for his vertigo/dizziness and nausea. It isn't working though, as he was sick several times today.

Not sure what I wanted to say, really, except that sometimes I get very angry and upset that it seems so unfair. (I know life is unfair - my sister died at 19.) Just seems so tough on him (and me and DD). One year of 'normal' marriage is all we got :(.

Oh well - just had a call from him to say he's being discharged! Not sure whether to be pleased or worried though... I mean, if he collapsed once today, what about tomorrow?

Hey ho. I'm off to lie down (past my bedtime - how sad am I?!) now I know he's coming home tonight. Thank you again SO MUCH for replying.

OP posts:
Blu · 05/03/2006 21:27

He's being sent home at this hour of the night?

Do keep bumping this - what you are going through IS difficult, and there are others who know what it feels like because they are coping with it too. Keep checking this thread.

Hope all goes well, or at least better, tonight.

Original poster
Verso · 05/03/2006 21:28

my 'both' seems to be completely inappropriate; while I typed some more of you replied! Thanks!!

DH is 31 (I'm 35). We'd really like another baby before it's too late for me fertilitywise, but I'm not sure how sensible an idea that is. (Can't quite believe I'm saying I want another baby btw - I'm one of the people on here who had a horrible birth and 3rd degree tear!) Just not sure if it would be silly and selfish to go for it.

Mind you, if you know someone with MS with FOUR children...

OP posts:
Twiglett · 05/03/2006 21:29

you're right its unfair Sad

but your lives didn't end on diagnosis .. and I don't think there's any such thing as normal marriage anyway .. certainly not in our house Wink

don't forget you aren't alone

HappyMumof2 · 05/03/2006 21:34

my ex is 32. Ds is 6 1/2, and his youngest. He has only been diagnosed since 2004 and so far seems okay the majority of the time, but I haven't experienced his relapses. I know how awful it must be for all of you, it must be extremely difficult to cope with.

His having MS doesn't completely rule out having another child, does it? What does he think?

mykidsmum · 05/03/2006 21:37

Hi, I was just wondering after reading your post whether you could get some help at particularly difficult times, funded by social services. I know of a mum who has ms and is allocated ten hours a week to have a PA. I was thinking that an extra person in the house to help with stuff would ease the pressure off both you and your dh. Not sure if this a feasable option, but may be worth considering.

moyasmum · 05/03/2006 21:48

Don't think I can add anything more practical than twiglet .Now is a time of uncertainty and monitoring and not for considering definate implications re more kids. I'm lucky my ms is benign and ive only had three attacks in 12 years.I dont like to think of myself as rr.
When I had my first attack(suspected but not diagnosed)I was paniced into getting married and pregnant asap. It felt like things were slipping away and I needed certainty.With ms you cant gaurentee anything. We now have two girls and I had lp and mri to confirm the situation. Love and support your dp and allow your dd to be your inspiration. Shes still very young dont be paniced into the now or never view. Keep posting here but remember there is a fantastic ms community on the net(am I allowed to reccommend?)who are caring, practical, funny and who helped me terrifically.look after yourself.

Twiglett · 05/03/2006 22:04

yes you are allowed to recommend moyasmum.. please post the link

Original poster
Verso · 06/03/2006 07:12

Oh I'd love to hear about the online community. DH's consultant and MS nurse warned us off the MS Society on diagnosis, because they said we would hear too many depressing horror stories, and people who had let their MS take over their lives. But I do feel isolated at times, not least because DH takes a very stoic, stiff upper lip, approach when he has relapses - so I see them coming for weeks but he denies it or makes out it's something unrelated to the MS.

He has a diagnosis of RR MS and the latest relapse has been going on since before Christmas...

oh DD is stirring, back later.

OP posts:
moyasmum · 06/03/2006 08:08

Really see your point about ms soc,good for info only,they dont like to get anyones hopes up,preferring to cover their backs!. My favourite is msrc.co.uk which is so much better and actively supports communication between ms groups. The people you meet are often far more knowledgable than your average GP and they encourage reasonable debate and are not so dogmatic. Beware the jokes section however, if you are easily offended, they are usually quick to pick up the latest net jokes going around!Joolysjoint.com is another sociable site to look at .

Twiglett · 06/03/2006 08:16

\link{http://www.msrc.co.uk\msrc}

\link{http://joolysjoint.com\joolysjoint}

HTH

Issymum · 06/03/2006 10:11

Hi Verso

I'm taking a bit of a break from Mumsnet at the moment (too much to do at work and at home!), but some other kind Mnetters emailed me with a link to your thread. DH has MS, he was first diagnosed in 1982, we have a three year old and a five year old and I can absolutely relate to the fear and anxiety you are feeling.

If you would like to correspond more I can either post to this thread or email you (I think I have to pay my CAT fee first). Just tell me what you would prefer.

Two small points: I too particularly recommend MSRC (their magazine 'Pathways' is very good) and DH's MS symptoms are always much much worse if he has a nasty infection. We have kind of got used to that pattern - he gets a nasty cold/flu etc., all his symptoms deteriorate very markedly, he recovers from the infection and his symptoms then slowly improve. It was very, very scarey the first several times, but I find it easier to take in my stride now and tell myself not to panic until at least a few weeks after he has recovered from the infection.

Thinking of you.

Issymum

tamum · 06/03/2006 10:18

Issymum is clearly the best placed person to advise you, Verso, so I'm very glad she has come out of retirement, however briefly! FWIW I have 3 friends with MS, affected to differing degrees. One of them has three children, all born after her diagnosis, and although life isn't that easy she copes just fine. It's such a variable course that it must be very hard to deal with, but I have seen another friend rally remarkably from the most hideous relapses (almost completely paralysed and near blind at one point back to independent living). Good luck to you both.

butty · 06/03/2006 10:32

hi Verso,

sorry you are having a rough time of it at the moment.

i have just been dx'ed with Chronic fatigue Syndrome, which is apparently a form of ME but is also assosiated with MS, i'm not too sure in what way, as trying not to research as always makes me think the worst.

i am currently recovering after being bedridden twice in the past month although i am still tired and very much in pain. they say their is no medication for it other than rest???

I have 2 children one of whom has special needs and needs constant supervision and over the past year it has been very hard as i have been ill more than well, but my advise would be to go with what you want to do and take the good days as good days and the bad as bad.

that is what i am doing at the moment and although i am in tears half the time as it is affecting my ability to get around when it comes on, i know that in a week or so, i'll be fine although i don't know how long until i relapse again.

My mum helps a lot as well as my best friend.

I hope your dh is ok and that you find some answers you are looking for on MN as a really good place to get advise and support.

Butty.xxx

Original poster
Verso · 06/03/2006 18:15

Issymum, I would love to email. I didn't realise you have to pay a fee to CAT these days... I will investigate. I think I remember an email about that, but it's a dim recollection at best.

Thank you so much to everyone who has replied. I was panicking a bit last night (could you tell? Wink).

DH had his ears checked today at ENT and it's definitely not his ears causing the symptoms - it's most certainly a relapse. His MS nurse is going to call back at the end of the week to see how he does after a few days of steroids. They didn't have much/any effect last time, but I'm trying to be hopeful.

OP posts:
Original poster
Verso · 06/03/2006 18:16

Butty - I send you my sympathies. I know someone with ME and it's a horrible illness, not least because it's invisible, so you rarely get sympathy. I hadn't heard of a connection to MS, but it wouldn't surprise me, as MS can also bring on debilitating fatigue and pain.

Anyway - I wish you all the best.

OP posts:
Issymum · 07/03/2006 09:35

Hi Verso

I've just subscribed to CAT (Contact Another Talker) and have sent you an email.

Love

Issymum

cordobagirl · 07/03/2006 10:06

Verso,
Hi. I am a recent joiner to mumsnet and have been a bit of a lurker so far. But I felt I had to reply to you. My DH also has rr MS. He was diagnosed 11 years ago (now 37). So far his relapses have been pretty mild with no lasting effects, although the last one (about a year ago) affected his eyes for the first time. I completely understand your anxiety about the future. My DH is very stoical about it too. He has a much more positive outlook about it than I would in his position and really tries not to let it affect his attitude to things. I guess some of that has rubbed off on me and most of the time I don't think about it. But, of course, it's the nature of the disease that it rears its ugly head suddenly and you can't help the worry then, can you?

We have three children (DD1 5, DD2 3, DS 1). I don't think either of us really took MS into account when we decided about kids. It's so unpredictable that you could rule your life by it and then in the end it might not be as bad as you were expecting. I agree with what someone said earlier about not being rushed into anything. 10 months is still v young to be thinking about no. 2. Don't feel like it's now or never, make your choice in your own time.

Don't feel like I've helped much but am thinking of you and I hope the relapse goes soon without any lasting damage.

Weatherwax · 07/03/2006 10:13

Hi Verso

I also have "Mild" MS and can understand your fear of the future. At 27 I was told I had MS and I felt my chances of children had gone. Now at 43 I have 2 girls who light up my life.

Remember if he hasn't had a relapse this bad for ages that is good. Not the relapse but the gap between them.

I really decided to post to say 15 months ago they gave me steroids to deal with the neuralga I was having, it did clear it up quite well. The consultants I have talked to have said that it is good to keep a good positive attitude as they think it works. I let my membership of the MS society lapse after 5/6 years because I couldn't face opening their magazine.

Thanks moyasmum I will look at those sites you mention.

I hope your DH feels better soon

moyasmum · 07/03/2006 11:10

Weatherwax
Wow our situations are so similar!
Age of onset,condition,no of kids,age now and i can really relate to your attitude. I guess we have both been through the same thing at the same time.Warms my heart.
I hope you will like the msrc(even my kids know about"edited"sqiffy in the funny section). At one time,my gp could only suggest steroids for me which i didn't want to take, so I had a chat to the "guys" on the message board who offered other options which i then suggested to the docs .It all worked out well. Heres to keeping positive!