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Newly diagnosed and limbo

Hello everyone So I’m newly diagnosed and have my first Neuro appointment on Monday with the ms team in Swansea then a home visit by the ms nurse in a months time I don’t know what to expect or what questions I should be asking as my emotions are all over the place my husband still thinks I’m making it up and I haven’t told the kids yet so a few tips from you lovely people may help me get my #$/t together x thanks in advance x

Hi Dixie,

newly disgnoised here to but fortunately I got diagnosed and saw my MS on the same day 3 weeks later I have started my DMD’s (I’m on day 4 today so all very very new)

like yourself my husband was not great about it he said there’s absolutely a cure and won’t talk about it…I don’t know if that’s perhaps him not coming to terms with it …which may be what your husbands going through?

also I have only just told my kids (I have 4 aged between 3-13) this week mostly because there’s no ignoring the sharps bin it’s massive and bright yellow lol. My son who’s 13 it goes in one ear and out the other but my 10 year old daughter has had a lot of questions I told there primary school and they have been very supportive.

perhaps have a look on the MS trust website as the NHS point a lot of patients in that direction and it has some very useful info there with regards to DMD’s etc for going to your next app.

sending you lots of smiles,

ali xx

i agree that you should tell your kids about ms.

keep it matter of fact and speak calmly as though it’s no big deal.

(oscars may be awarded later).

if they only know half of the story, they’ll be looking at or asking unreliable sources.

first up though, make a list of the things that you are finding difficult.

eg - having a shower or bath.

the nurse is able to refer you to occupational therapy who will arrange for bath and shower rails to be fitted.

if you have a dodgy bladder the nurse will refer you to the bladder and bowel clinic who can provide excellent help.

once you have seen your ms nurse, then tell the kids.

make the most of this appointment because the ms nurses are wonderful but very busy and unable to see us very often.

hubby can be dealt with later!

it’s a man thing, used to fixing stuff but you are not stuff and he can’t fix you so be patient with the poor lamb.

carole x

oh and read up on the dmd’s because you should be offered one and asked to choose.

if you are at least familiar with the names of them and the means by which they are administered (injection, tablet, infusion) it will be a huge help.

Hello

You might find this quite helpful: https://www.mstrust.org.uk/understanding-ms/newly-diagnosed-multiple-sclerosis

There are a lot of links on there and useful bits and pieces like how to tell other people.

Husbands (or men generally) do find it difficult when their partners have been diagnosed with something that is not fixable or curable.

Life might be easier when you’ve started on a disease modifying drug (DMD). Have a look at: https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid It might help you to understand the various drugs which will help to reduce relapses and their severity. You won’t get completely free choice of all the drugs, but the MS nurse will help you through the maze.

And keep coming on here, there are lots of people who will try to help you get your head round the diagnosis.

Sue

Thank you so much guys that is really helpful I’ll follow those links now and take some notes My 15 year old will be very suportive but my 12 year old I’m not so sure think she’ll worry she’s got it she’s a typical drama queen! X

You can show your children this information: https://www.mstrust.org.uk/a-z/risk-developing-ms

If your 12 year old knows that she only has a 1 in 48 chance of getting MS, that might help a bit.

And even if she were really unlucky, and develops it, the most likely age is in the 30s and 40s. Younger people can get MS (just as older people can), it’s just uncommon. To the typical 12 year old, being aged over 30 is almost unimaginable.

Sue