Forum

Wife finally diagnosed , what next ? Sounding board

My wife ,after a year has been finally diagnosed .Which was expected,but still a shock when the letter came through the door. She’s an upbeat , strong woman with a great sense of humour and I love her dearly. Out of the two of us ,I’m probably the one who’s more anxious about it all , which feels a bit strange . I know we can support each other ,if we just talk about anything that arises that we are both worried about . What next ? I’m not sure now we’ve got to this bit , but I’m guessing its the age old " take each day as it comes " Stressed yes, tired very !!! Great just to sound off ?bloody fantastic !!! Will be back on the forum again at some point , wish us luck x

Hi, Diagnosis by letter! I was also expecting my diagnosis but it still hit me with a sledgehammer and even now nearly 7 months later I get tearful about it. My next step after diagnosis was an appointment with the nurse to start DMD’s, it depends on the area you live in sometimes I think. And yes the “take each day as it comes” is probably the best advice. I still think I can do everything and then regret it the day after, so it’s getting to know your limits as to what you can and can’t cram into one day. Hope the relapses stay away for a very long time and good luck in the learning curve Ruth

Hi Beef. Sorry to hear about your wife’s MS diagnosis. I was shocked, but wasn’t shocked, when I was diagnosed with RR MS in June. I was an ultra fit endurance athlete before this s@%*. That said, I’m emerging from this relapse and things are getting back to normal, slowly! Like you, my husband does fret and worry about me, but we carry on as normal- the best way we can. The following comment was used by ‘Pigpen’ a while back and it is now my mantra, for our life going forward, " Your life will continue to be mostly fine, occasionally brilliant and once in a blue moon, a little low". Isn’t that just a brilliant saying? Anyway, keep strong and remain happy! Tracyann x

Yes, it’s still a shock even if expected.

Take each day as it come. Ask the MS nurse about problems - probaly not an immediate response but helpful.

DMDS can lessen the number and severity of relapses but elegibility criteria are two or more disabling relapses in 2 or less years. “Disabling” is often taken as being less able than before the relapse but it is the prescribing neuro’s judgement.

Prescription of DMD has certainly been a “MS care lottery” in the UK. By Country from the best: NI, England, Scotland and last Wales. This is from a report by the MS Society (Googling “MS care lottery” should find it). I think this report spurred the government to tell care trusts to prescribe DMDs in eligible cases.

Hi welcome to you and your lady to the forum.

Here you will find support, advice, tips on how to cope with certain things and the odd laff or two as well.

Being diagnosed within a year of starting problems, is pretty quick. It can take some time for the news to hit home fully.

It has happened to both of you…as is obvious from what you say. Your wife is lucky to have such a thoughtful husband.

Her upbeat attitude could bolster her from the reality of being told she has MS. Even so, there could be times when she wobbles…but may not tell you if she thinks you arent as strong as her. So watch out for her being a bit quieter, or more prone to tears, yeh?

Depending on her type of MS, there may be DMDs (drugs to help reduce/lessen attacks and disability). There are also drugs to help with the various symptoms.

An MS nurse will be available for her to ask questions. You may have to seek her out yourselves, as sometimes happens.

Look after BOTH of you, yeh?

luv Pollx

Hi Paul! Talking about tears, I have been very treaty lately & hubby is taking an holiday in few days time but I am very sad! Blame the MONSTER she says. Rahma XX

hi beef

your wife sounds like a very strong lady.

just make each other a few promises

she promises to tell you if she’s feeling low

you promise to listen

she promises to ask for help if she needs it

you promise to help when needed but not to force your help on her.

it can get a bit fraught at times but i’m sure you’ll both be alright.

i was also a strong minded person and if i didnt want help i’d get annoyed at my husband for insisting that i accept his help.

i think that has been the hardest thing for me to cope with.

good luck

carole x

Thank you all for your support and kind words ,will keep you posted . Think the next marathon I run might be for a certain charity xx