mums with multiple sclerosis

[mmoob]

I am a mum with MS and young children. Am about to start beta interferon treatment. Am feeling very unsure about it - last minute cold feet being felt very strongly. Am particularly concerned about the possible side effects and how I will cope with the children if they are bad.

Are there any other mums with MS on mumsnet, and any with experience of beta inteferon?

mmoob, hi & welcome to Mumsnet
I am afraid I have no experience of MS but I wanted to answer your post to say hi and bump it up as I am sure other MNers will have something constructive to say.

Best wishes, winnie

Thanks Winnie... doesn't look like there are too many takers!!

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Hi mmoob, there are one or two mumsnetters with MS. I hope they come on and post soon. Not sure if any of them have had experience of beta interferon though.

When did u get diagnosed with MS and what symptoms did you have mmmob??

Hi HappyMUmof2, yep, that's what I am starting.

There are various 'new' drug treatments available... from what I understand the beta interferons are most appropriate for people with relapsing remitting MS because their main benefit is in reducing the number of relapses (so if you normally get 6 in a year you get on ave. 1/3rd less when on the treatment, so theoretically, 4... hopefullly the two that you DIDN'T get are the two you really didn't want i.e. the bad ones, but it is obviously russian roulette). However I think there are a couple of other options aside from the interferons - I don't know too much about them but obviously the newer the drug, the less tried and tested they are... I think there are a couple of other options in addition to the interferons.

Different health authorities prescribe the drug in different ways I think (the famous 'postcode lottery' - but i am not sure if this is still the case or whether the rules are a bit fairer now). You basically get given the option by your neurologist if he/she feels that you are eligible and would benefit. You have to meet certain criteria to be eligible (e.g. no. of relapses per year, and where you are at with your MS). I know it is a very expensive drug for the NHS to supply so i don't think they necessarily make it that easy to get.

There are a lot of 'ex's' with MS... seems to go with the territory, so sad.

If he has RR MS he should at least ask if he is eligible...

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Thanks for that alexa1. Good to hear there are other mumsnetters with MS... somehow i identify myself more with being a mum than with having MS - or at least choose to!!

My MS causes extreme fatigue (just like motherhood - but even more) and pain and a whole other handful of unpleasant but not earth-shattering symptoms that seem to be brought on by stress and tiredness - i.e. motherhood!!! Rather tricky but I feel so lucky to have children at all, however exhausting it is. From the outside no-one would ever know I have MS.

I was diagnosed 8 years ago and am still walking (although limited distances) for which i am eternally grateful. I am taking the drugs for the children essentially, in the hope that the chances of being a good (well, not good, but normal-ish) and reasonably mobile (although always tired) mum for longer will be better if i take them. We'll see. I would not naturally choose to inject artificial substances into my body 3 times a week!!! But if my chances are better by doing so it seems to be the responsible and sensible thing to do.

mmoob - reflexology and reiki are supposed to help the symptoms of MS.
are u having any of these?

HappyMumof2, I think there are different schools of thought about the best time to start treatment. You do have to be having regular relapses and meet the criteria for the NHS to fund it, but I think some neuros believe that it's best to start treatment as soon as you can after diagnosis (from what i understand that is the normal practice in the US) but others have a more wait-and-see approach. It's taken me 8 years to get to a point where I have been ready to accept some kind of real medical intervention (aside from specific symptom management drugs). I don't think taking them any earlier would have done me personally any favours... I think i would have felt more 'ill' than i was having to take such serious medication so early on. I suppose it depends on how intensely the MS is felt in your life as to whether the downside of the treatment is worth it.

As far as side-effects, for me the biggest is that the simple fact of having these drugs and having to inject yourself regularly really means, officially and in a very loud and clear way, 'you are ill'. Which i try not to feel/think too much if i can get away with it!!

But in real terms the other effects are that I think approx 40% of patients in the first 3 or 4 months experience what they call 'flu-like' symptoms. Sounds like nothing but feverishness, temperatures, sweats, aches and pains are difficult to tollerate when you are looknig after young children. OK a couple of times a winter as most of us get - you muscle through somehow even though you feel horrendous, but the symptoms come after every injection - i.e. 3 times a week. So that is a huge concern for me. Hopefully I'll be lucky and NOT be one of the 40%... Other side-effects are injection-site infections. I think your skin can get very sore and can then get infected which could be very painful - although obviously temporary, not something to relish!

If you could lie in bed whenever you felt a tad poorly or overcome by side-effects, I think the risk of the drugs would be easily worth taking. I just worry that it will be too much to hide from the kids 7 days a week. And that in addition to the existing MS symptoms.... argggg all seems like a lot. I'm sure when I am 'in it' it will seem easier but from where I am now - about to plunge - it seems very daunting...

alexa1, yes, I love reflexology... I'm sure ANYONE would!!! Thanks, have been tempted by reiki too... all get's a tad pricey though!