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Help me to help him

Hello,
I'm new to the site and would like to ask for some help/ advice/reassurance. My husband has been diagnosed with atypical MS after suffering his second, what we now know as, relapse in 5 years. He has many symptoms but the one causing him the most stress is his left eye- it's turned in so his vision is double. He's had a patch to ease this but on our recent visit to the MS consultant he was told to take it off and cope. The consultant also told us to just wait to get better, that he wasn't dying of cancer and he'd see us in another 6 months after more MRI scans and a lumber puncture. I now feel like we're on our own for the next 6 months and I don't know how to help him. He is okay some days but can be really down and angry and whatever I say just seems to make him worse. He's been referred to an opthalmologist for prisms but is very anxious about the waiting time, even before he's got his appointment. I've read that stress can have a real negative effect but I don't know how to help him stop worrying. We have 2 children and I'm an assistant head teacher and I'm really struggling to physically do everything that needs doing as well as mentally cope. I feel like I'm loosing him at times. Is all this 'normal' for MS? Please help.

hi cather

with your career being one that you want to give your full focus to, you need to look after your own health.

if you go down, you won't be able to look after your husband.

men and their reluctance to wait should have books written about.

it is understandable that he is down and anxious.

the wheels of neurology take their own sweet time and a lot of it is a waiting game.

how about hiring a cleaner to ease your load.

the neurologist's remark that at least he didn't have cancer was very inappropriate.

the MRI scans and lumbar puncture will get him closer to a diagnosis.

yes it is normal for us with ms to be difficult to live with at times.

i hope that i'm no longer difficult but that's just my opinion.

yes, stress makes it all worse. mindfulness meditation helped me.

take care

carole x

I have MS

Hi,

If you find that the eye patch helps, then ignore the MS consultant and wear it. That's what I did when I had optic neuritis and my brain was getting different information from each eye.

We all have to make our own ways of dealing with MS, so use the methods which suit you. You're not there to keep a consultant happy.

Best wishes,

Anthony

I have MS

That consultant needs a lesson in sensitivity if you ask me. He’s right about your husband not dying of cancer. But that doesn’t help when you’re seeing double. 

And if the double vision is caused by a relapse that’s going to remit, why not wear an eye patch? Is it likely to make things worse? I doubt it. 

I must say that furious anger at diagnosis is not unusual. We all go through various stages when diagnosed. Hopefully, given some time, remission of symptoms, more tests and a decent disease modifying drug (DMD) life will improve for both of you. 

Although I don’t understand why the neurologist couldn’t schedule the lumbar puncture sooner than in 6 months. And actually if your husband has already been formally diagnosed with MS, the LP shouldn’t be necessary. Have a look at: https://www.mstrust.org.uk/a-z/mcdonald-criteria Plus, as he’s had 2 relapses, assuming it’s relapsing remitting MS (and in general people are assumed to have RR unless and until proven otherwise), he should already fulfill the criteria for a DMD. See: https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/m...

Given all of this, I would be just as angry as your husband. And assuming I am right about his diagnosis and relapses, I’d even suggest speaking to the hospitals Patient Advice and Liaison Service (PALS) about the consultants attitude and disregard of current prescribing guidelines. It’s now widely agreed that early intervention is a good thing for RRMS. 

Sue

You cannot stop him worrying and you cannot stop him having MS. He will be having a tough time right now, but there is a limit to what you can do about that, beyond being there and being on his side.  The presence of the people we love is a great blessing even though they can't fix any of the things that need fixing.  So my suggestion to you would be: just be there when your other commitments allow, and make sure he knows you're there and you love him.   Keep on being there, and you'll be giving him all the support that you can.   

Very importantly, look after your own health.  The thing they tell you on the plane about putting on your own oxygen mask before helping others is absolutely right.  It won't help your family or anyone else if you start thinking you will only succeed if you make everything OK for your husband.  That isn't something within your power.  Concentrate on the things you can fix,and do allow yourself to take pleasure in your life.  It's not disloyal to get on with things and enjoy it, so - please! - never feel guilty when you have had a good day: that won't make you a bad wife!  I'm half-joking, but the point is a serious one.  

Alison

Thank you so much for your advice and experience...just nice to know someone knows what I'm talking about! I will certainly take all your help on board. Big breathe and carry on! X

Hi - I can hardly believe the remark made by the neurologist - MS is not cancer, of course - but it's hardly something to be brushed under the carpet either! My wife started off in a similar way it seems to me as your husband; initial diagnosis of optic neuritis then another relapse followed by the MS diagnosis. We've found some clinicians helpful but not all - some don't seem to really understand.

I'm very sorry to hear of your situation but getting the diagnosis is very important in my view. Certainly in my wife's situation stress was a huge causal factor in relapsing - and, also, her behaviour/mood/cognition. She is off work now and the impact for the better is phenomenal - which in turn means her ability to live more happily with her MS is significantly improved. She is just as MS-impacted but psychologically in a much better place and it feels like I've got my wife back after a time of high stress - maybe if your husband got the diagnosis and subsequent treatment he may be less down and angry?

In terms of the eye, my wife wore a patch which really helped, and now wears glasses with one lens for her bad eye and a clear one for the other which also helps. You can get an eye test and glasses quite independently from anything the neurologist does so that might be an option.

From a carer perspective I'm not sure how helpful I can be - being patient certainly helps, with a view that working towards a solution is sometimes all you can do as opposed to being able to fix things quickly - MS is a way of life in my view, and learning to love with it (everyone concerned) is so valuable.

Good luck - do contact me if you wanted any more of my probably useless perspectives!!!