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Any MS mums out there?(55 Posts)
First time mum with MS, just wondering if there are any others online. Have only met older folks with MS.
There are definately some others on the board as they have been kind enough to advise me and others on here who are currently going through the investigation process. Not sure of their ages but they seem nice
hi MWH - I have ms. there are a couple more around too. Mine is very mild though - with very few problems since i was diagnosed in 1999 - when pg with dd1. how about you?
Diagnosed 2004. So far only mild RR, two bad episodes. OK with steroids (oral & IV). Nothing since April 2005, got pg in June and fine through it. DD is 7mths. OK until last month. Very nervous now as legs are very weak some days and feet go numb. Trying hard to be positive though.
I've given up thinking about it these days. My feet are kind of half-numb permanently now and I do have the odd day when my legs are a bit weak, but I've decided I can't live with that awful constant dread that it might get worse. It's quite hard to let go of it - and I've had longer than you to get used to it - but I've managed to. How old are you? I'm 36, 29 when diagnosed - with optic neuritis and trigeminal neuralgia - both of which were awful, but yet to be repeated
I'm 35 and I've just had ON and my sight hasn't fully recovered yet - I don't know if it will get any better than this or not.
I've also got strange tingling/numbness in my left arm and hand and also a bit in my left leg. I am seeing the neurologist in Jan.
I was really stressed out when i first found out about the link between ON and MS but at the moment I am OK as I figured there sod all I can do about it anyway.
Sorry I know this isn't my thread but obviously I am curious about this.
I'm 36 as well. Started with optic neur/bad night vision in 1999, but I thought I wasn't eating enough carrots!
Trigeminal neuralgia sounds bad- poor you.
'05 had Bells' palsy, grey spots obscuring vision in left eye, then right, then double vision, dizzy, severe nausea, skin pain/numbness/tingles.
Yeah, the numb/tingle is pretty constant. I guess that's a 'normal' MS issue. I tell them about it at check-ups & they always say 'it's only sensory, we worry when it's motor'. Recently had an equilibrium prob and listed to the left like a magnet was pulling me over. Fortunately it went away. Also had the sensation a hair was tickling my face. That was more annoying than anything else had been. Got used to the other things but not that.
What is Trigeminal neuralgia ? I have read up a lot but I don't remember that.
amynnixmum, you haven't been diagnosed yet? Found it kind of a relief to know what was causing the stuff, but knowing you have MS and there is not much you can do about it is crap.
Hi, I'm also waiting to be diagnosed. My gp thinks I have MS - at the moment I have a numb foot, dizzyness, strange eyes and immense tiredness. Last year I had strange episodes. I am sort of delaying going to the neurologist at the moment - I'm not sure I want to know really. (I know I will see him, but not ready for it yet).
I just had to look it up myself in a new window. It said constant pain & sensitivity in face.
Hmm...come to think of it, there have been times the soft make-up brush was excruciating.
No MWH I am right at the beginning with it all. I have had numbness and tingling in my left arm and hand on and off for the last year but though it was just due to stress. Then a couple of months ago I developed ON and found out about the link with MS and suddenly the numbness and tingling seemed rather more sinister. The opthamologist referred me to the neurologist when i told him about the numbness but I don't see him until Jan 25th so all very new at the moment. I would rather know if its due to MS but I have to admit that the idea is very very scary.
The neurolgist told me if it starts with ON it's usually mild MS.
I suppose that's kind of good news.
Are you all having an OK time taking care of your kids? how old are they?
Yeah thats what i read. The opthamologist didn't mention the link. I found out myself while looking online for any ways to help my sight come back quicker. Didn't find any of those but found pages and pages about the link with MS. Really frightened myself as TBH I didn't know much about MS - I thought it killed you in the end and always resulted in severe disability and that the only variations wre in how quickly you got to that stage. When I read up on it I was actually relieved. The hardest thing for me is the complete unpredictability of it - its even unpredictable now as even if I have and MRI etc there no guarentees that the results will be acurate. It feels like I am going to have to wait and see whether or not I get another clinical symptom before we will know.
The unpredictabilty is the hardest thing for me, too! Never knowing if it will be better or worse. Insert here lots of encouraging words about appreciating every day and living for the moment (blah!)
Don't worry, I was the same when I first found out. Imagined the burden I'd be to DH, would need a new wheelchair friendly house, etc.
I knew 2 people with MS, one bedridden, one in wheelchair, but since have found lots of others living 'normal' lives and taking beta interferon, and others who just pus up with the stuff.
I too have been told that starting off with ON tends to indicate milder MS. TN was awful - I got it shortly after the ON. I kidded myself it was something to do with my teeth - you get nerve pain all the way up the side of your face - I went to the dentist in the hope he would say I had an absess or something and take my tooth out. I kind of knew it wasn't that though. It was Christmas 99 when I was diagnosed. what an awful time. looking back I was really quite ill. the neurologist said he didn;t want to admit me to hospital when I ought to be at home so I had to keep a needle thing in my hand and go in for about 3 or 4 days for IV steroids. I was pg and thought my life with the baby was going to so different to how i'd imagined it. but it hasn't been. it really hasn't.
Ugh, I had the cannula(sp?) in my arm for 3 days, too. Can't imagine having that in with a baby around.
fatwoman, was that the only time you had steroids? I guess they made the TN go away. I wonder how many times they'll give them to you.
When I had TN a few years ago they gave me the sterods and told me to take them each day in orangejuice - like the sunflower oil I've taken since 1990 when diagnosed. I just swallowed them and they made me increasingly nausous! Sound as if it was the better way to take it though . I started with optical problems etc and managed over 10 years without a noticable relapse, I'm 43 now and thought my life was over when diagnosed 16 years ago. It's not by a long way
Hi weatherwax, very glad to hear that! good, cheering news.
Not a Mum with MS, but a Mum who's hubby has MS...
P.S. Hubby is on beta interferon - diagnosed in 2001, carrying on with work, life etc. Now trying to decide whether or not to have another baby...
Not sure if this is the right place to post or not, but I'm worried about having another baby as DH's fatigue makes it difficult to cope with one, let alone two. I did all the broken nights myself last time, and trying to do that with a toddler and a full-time job might be too much I think!
I am the main earner in our household and we imagine it may happen that DH has to go part-time or give up work at some point... in which case, having a second baby would be madness. So why do we still really want a sibling for DD?!!!
DH is v sweet and worried that not being able to have another baby (or rather deciding not to have another baby) may upset me...
Hi, just found this thread. I have relapsing-remitting MS and have had it for 8 years. Got 4 kids, one with severe cerebral palsy (2 wheelchair family!)
I am 44 and have been diagnosed for about 16 years. I started off with ON and have had a weakness on my left side (particularly my leg).
I am still walking, but I find it more difficult.
I had my daughter when I was 40 and did breastfeed her, which was pretty knackering at times.
I last went to the neurologist before DD was born and she said I may have benign Ms, but I'm no so sure now with my walking problems.
I think that now it sems to be getting easier having a child, but it was difficult when she was running off as a feisty toddler. Now she's three and a half and a lot more controlable (says she!!
I have also heard that ON indicates mild MS (which is what I have had up to now).
I'm so glad I had my daughter, as I have much more meaning to life.
What do others think about having kids and MS?
(Sorry to hijack and go on ........)
How old is baby now ? 10 months?
Are you coping all right?
I think babies ae a bit tiring at first, but then we get into a routine with them, don't we?
Are you getting help?
Please let us know.
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