Partner has just been diagnosed with MS

Everyday living
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Hello everyone, within the last 2 weeks my partner (who is also a Nurse) has been just diagnosed with MS, she is only 37 and is also a Type 1 Diabetic. It all started 2 weeks ago when on a typical friday night where we at our local pub having a few drinks and the next day when she woke up she couldn’t see properly and had dizzy spells. At first we thought she had her drink spiked but wasn’t the case. She complained of a really bad headache and couldn’t focus on anything.

Went to our local hospital A&E and at first the put it down to dehydration and put her on a drip overnight but symptoms got worse and worse. Went to her GP and did an eye test and said we’d better get down to the local Eye Hospital for some tests etc. A long drawn out day but one particular doctor said did any in her family suffer from MS? Which there wasn’t but with all the tests done they concluded that she had a stroke or TIA and started to make arrangements for MRI Scan and CT Scans.

After the scan results came back they did a Lumbar Spine procedure and it was then it was diagnosed that she had MS. Being a Type 1 Diabetic she thought also her numbness in her toes was down to diabetic neuropathy but in fact it was the beginning signs of MS.

She has now been admitted back to hospital where her eyesight has deteriated again today, not sure what that term is called but has been on steroid IV and oral medicines but they have now stopped the Tramadol and Codeine just in case it was triggering the headaches. For me as her partner I feel kind of pushed to one side and no one yet has asked how I feel, but tbh I feel helpless at this stage and didn’t want to accept that she has now got MS and think it could be something else, but she is a very independent person and as they say, nurses make the worst patients lol. Her courage on just getting on with it and have to live with it is good to hear, all she wants is her sight back she said today, the rest she can deal with. She has slept most of the day today and says all she feels like is going to sleep all the time, but last week she was bubbly and cheerful until the last few days, its probably something that I suppose happens in the early stages of MS.

Thanks for looking in x

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Dear Wizard. I am not an expert on the particular and individual matters which you have described, but i am compelled to share. I am also more than happy to have anything that follows, corrected by other forum contributors…

The treatments she is receiving most immediately are undoubtedly contributing to her sleeping most of the time. That will of course pass.

Her attitude of pragmatism and courage to ‘just get on with it’, will be a big part in determining how well she will cope with and progress through the MS journey that awaits you both.

Her sight issues, optic neuritis (i think it is spelt) is terrifying and also to be temporary.

I sympathise greatly with you, your position ‘on the side lines’ and the profound sense of helplessness you have to currently contend with. Things no doubt felt like they got out of hand pretty quickly and then thwack… a diagnosis and an entirely new (and not too optimistic) outlook on your lives has materialised.

Despite the break neck pace of all that has happened, i would recommend that you simply do your best to calm down. I do not mean this to be condescending in any way. But sincerely, there is an adjustment to be made here, for all involved. Things will settle down and the outlook more easily discerned.

There are therapies for the immediate symptoms (as you know) and other options to consider to shore up a more positive future. Do not be a hurry to conquer the challenges you see before you at this time. If anything, come to terms with the very real, and frustrating fact, that some questions will never receive an answer.

The usual sensations of victimisation, denial, stiff upper lips, and pure dejectedness will all crop up to varying degress and durations. Do what you can / need to, to deal with them. Once the smog starts to clear (and the eye sight etc improves) things will not seem so dire and this burden of MS will be one that will be tolerated, but may also allow for an enhanced appreciation of all that life has, and still waits to offer.

The very best of luck to you BOTH!

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Hi Wizard

That’s a good answer from Paolo. I’m not surprised you feel shoved to one side. There can be so much focus on us with MS - our physical symptoms and all the different emotions we may be feeling - that partners & family members can easily be forgotten about. But as you say, you’ve understandably got your own emotions in turmoil. And you’ll both find your feelings change over time. Things like denial, anger, depression, are all common feelings that we & our loved ones can feel at different times as we grieve the loss of our old lives, and adjust to life with MS. If either of you feel negative emotions instead of feeling strong, there’s no need to feel bad or ashamed about that. There’s an assumption that us Brits should always be strong & put on a stiff upper lip. But that’s not always helpful, and it’s perfectly normal to feel weak. Life will be painful, and tough, and there may be rocky times for your relationship. BUT, it is possible to have a deeper relationship because of it. That’s certainly been my experience.

I think it will really help to reach out to others for support, whether that’s friends & family or professional support. As a general rule I don’t think it helps to keep emotions bottled up, so be honest with people about how you feel. If you’re feeling angry & frustrated, then do something physical to get it out - punch a pillow, have a good scream. Better to let your anger out on a pillow than each other! But be quick to forgive - that’s really important. And give her space if she needs it.

You’ll no doubt have all sorts of questions about stuff too, like what treatments are available for different symptoms. So ask as many things as you need to on here, and someone will be able to answer. If there’s an appointment coming up with a neurologist, then it might be helpful to write down any questions you have to then take to the appointment.

Hope some of that helps

Dan

(PS, on a practical note your partner is legally required to inform the DVLA that she has a confirmed diagnosis. They’ll send a medical questionnaire to complete, but it doesn’t mean she won’t be able to drive. And tell the car insurance company too, otherwise your insurance could be invalid. They’re not allowed to increase your premium though.)

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Thank You Paolo & Dan for you replies, have taken on board what you have stated and I am to say a very patient person and have given space when needed. As a practising buddhist I am fully focused on our future and what it may bring to us. I think both of us are trying to support each other at the moment but not actually showing it, as yet. Still a lot to sink in but with words of encouragement and support we will prevail.

Thanks again, will keep you posted on how we are doing etc

Regards

Ade

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Hi Wizard

You’ve had some very good advice from Paolo and Dan.

This is the worst time with MS, until you get more familiar with it and its vagaries.

It is possible that your partner will make a full recovery from her present relapse. I had ON some years ago, I went completely blind in one eye, the sight has now fully recovered in that eye.

The trouble with MS is that you never know what is going to happen and everyone’s version of MS is unique. This is very difficult to come to terms with.

I hope you are able to find support, although you don’t have MS, don’t underestimate the effect it may have on you.

This will get easier with time.

Take care

Anne

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I second what everyone else has said. Give her the time and space to come to terms with the diagnosis (which is scary, and as a nurse she’ll maybe know more than is comfortable about it already), let her make her own decisions as much as she can… and don’t feel that you have to keep a stiff upper lip all the time. She may get to the point where she wants to talk…it really helps if your partner can talk to you quite non-judgementally when she feels she needs some support, but you do not have to be strong for both of you all the time! She will need you, and you have to be in a fit state to give that help. Look after yourself. Hope it works out for you!

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Wizard, can I just thank you very much for posting this. I am recently diagnosed, following a bout of ON (which I have virtually completely recovered from - vision is about 95% of what it was. Started losing vision on 2nd April, and went completely blind over the next 10 days), and I hadn’t really thought about it from my husbands perspective. He is a very gentle, caring man, but I haven’t once stopped to ask him how he is, or how he feels. I am going to make a point of sitting with him and talking about his concerns and his fears. MS is affecting him as well. It’s not all about me.

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i concur with above excellence advice and can only add that from experience both me and my wife benefited from the ‘getting to grips with’ course held in a branch local to us. a must on so many levels.

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Sometimes it might not feel like you are / can do anything but by being there for her Wizard you are helping so much. I had a similar shock diagnosis / set of symptoms and I was beyond scared. Having someone just be with me was what mattered most at the time.

My sight came back. I’m wishing her a very speedy recovery.

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