Multiple sclerosis & parenthood

[Verso]

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!

Thanks for the replies, cordobagirl, weatherwax and moyasmum. DH is much more positive about things than I would be, I think - but then I suppose it's different if it's happening directly to you, rather than indirectly. Anyway, he has decided to go back in to work today although he's feeling pretty rubbish. I'm not sure how I feel about that, but I managed not to nag .

I particularly appreciate all your comments about not needing to rush a decision about baby #2 (apart from the fact I'll be 36 this year, which has some bearing I think...) However, we were told by the MS nurse that something to consider if you decide to go on to beta interferon is you can't conceive while you're on it, which is rather worrying. I'm not sure if it affects sperm or not (is this TMI? Sorry!) but she said it was a consideration. This is what's making me fret, I suppose - the fact that if he needs this treatment, he really should have it, but that from the sound of it, it would be closing a door, familywise.

I'm not sure whether I explained that very lucidly, sorry. Is it possible to take beta interferon for a while and then come off in order to TTC? Would symptoms recur much more badly as soon as you came off it? Does anyone have experience of any other disease-modifying drugs?

He's not been recommended for beta interferon etc yet because his consultant judged his relapses to be mild, as he hadn't taken time off work for them. (The fact he couldn't write and could hardly walk at one point seems to be neither here nor there.) Seems a daft way of judging the severity of relapses to me, given that some people will drag themselves to work off their deathbed, whereas others will languish in bed at the first sign of a cold! Ahem. I'm not the consultant, though, am I?! Anyway - this latest relapse may be taken more seriously though - well, it would have been if he hadn't gone back to work today, maybe.

Oh I'm rambling, sorry...!

Hi Verso

You should definitely check back with your consultant on this one, but a quick Google on 'beta interferon conceive' suggests that it's women not men who are advised to stop taking beta interferons before conceiving as there is a risk that the drugs may harm the fetus.

If that is the case, you can maybe delay making a decision about a second child and cross that bridge when you come to it (although from experience the timely crossing of bridges is about the toughest challenge to overcome when you have a partner with MS!).

I've set out some of the extracts for you below.

Love

Issymum

PS I got your email and I will definitely reply - I just need to get through a whole lot of work today!

PPS I know that it's incredibly frustrating when your husband will not bend to the disease and take the time he needs to recover from a relapse or an infection but, in the long term, that bloody-minded even cheerful refusal to let the disease make substantial changes to their lives will be very valuable. Living with MS is as much a psychological challenge as it is a physical one and I know that DH's attitude - MS is b*gger and it's stopped me doing some things but it certainly won't stop me enjoying life to the full - is the right one.

Australian Prescriber: Interferons are contraindicated in women [my italics] who are trying to conceive and during pregnancy (category D) and lactation. They should be ceased three months before planned conception, but may be resumed immediately after delivery or when breastfeeding stops. If a woman taking interferon becomes pregnant, termination of pregnancy is not advised; the potential risks (as shown by animal models) to the fetus should be discussed with the patient. These risks appear to be low and a number of successful pregnancies have occurred in such a situation.

From the Copaxone (a beta-interferon) website: Dr. Coyle: Most doctors recommend that women discontinue disease-modifying drugs 1 month (or 1 menstrual cycle) prior to conception and not resume treatment until immediately after delivery. We are concerned about the potential damaging effect these drugs might have on the developing fetus, especially during the first weeks. There is also a concern that the medication might increase the risk of miscarriage.

And this from a Neurology journal: BACKGROUND: Although patients with multiple sclerosis (MS) are advised to stop interferon (IFN) beta-1a therapy before becoming pregnant, some patients become pregnant while on treatment. [I don't think scientific journals describe fathers as being 'pregnant' in the rather twee way that midwives do!]

lol @ 'twee'

Thanks for your reply. Although I am rather Google-happy as a rule and rush to it to find out most things, for this I have been strangely reluctant. I think because I worry about getting weird unsubstantiated information from obscure places. The stuff you quote sounds very solid though and definitely something to discuss with the nurse.

how are you doing verso?