husband diagnosed with MS - advice please

mishkanorman

My husband was diagnosed around 15 years ago now (he is 34) and in that time has had 3 'attacks' The worst of which lasted 2 weeks and he lost feeling on one side with decreased vision.

If you saw him you would tell me im a liar, his work dont know and thank god he has no physical signs, he also has no need of medication.

The people that are aware of his condition seem to wait for his head to explode or a limb to fall off, and i find it funny that a condition can be so varying in degrees but if someone shouted "all those with MS stand over there" he would go

Im not trying to boast but i thought it may do you some good to hear the positive side and maybe give you some hope :grouphug: Hug (not threesome:o ) for you and yours


mishka

Ted_Hutchinson

This Explains more about the need for Carnitine in certain individuals it also gives dosage details.

I should perhaps warn you of a possible side effect. this explains why nocturnal tumescence may become more pronounced. It's also used to improve the effect of viagra so be warned.;)

lessonlearned

Hello everyone

Thanks Ted for all the information about tiredness and MS. This is my husband's biggest problem at the moment. I shall be reading up as much as possible before we see the Consultant so that I am better able to take everything he says on board.

Seven-day-weekend, Mishka, Aly, Tiamaria and Quackers and everyone I've missed - Thank you so much for your stories - the tips and advice are really helpful. It is very comforting to read about how people are still living good lives with MS - it makes me much less fearful about the future. (You must think me a real wimp but my biggest fear is that I won't be much of a help to my husband).

At the moment I am sorting out the financial side of things (actually this isn't really anything new -I took over the household and business finances some time ago because my husband was too busy). - Just received notification that his Incapacity Benefit has been agreed.

I feel that if I can sort out the finances and general red tape etc and also get the house ready for sale tit will take a big burden of my husband's shoulders and he can get the rest he needs.

Good news - Medical Insurance will cover the consutltant's fee so that's a bit of money saved. Every little helps!

Basically it's now wait and see what the Consultant says. In the meantime we have devised an exercise programme and healthy eating regime to try and get us both to optimum health so that we can better face what's to come.

It's a glorious day so I am off to do some gardening and can throw open the windows whilst I do some decorating - kitchen at the moment.

Bye for now.

Quackers

lessonlearned wrote:

You must think me a real wimp but my biggest fear is that I won't be much of a help to my husband.

I am queen of the wimps so I realy wouldn't worry.

My husband has daily copaxone injections that he injects himself using an injection pen. He once asked if I could just hold his arm whilst he injected in his arm as his tummy & legs were sore. I couldn't do it My 12 year old daughter did it for him

Just being there for each other is all you will need to get you through this.

There will be plenty of other people to help with more pratical things in the future if its needed - try not to worry about the future - its really difficult as you really dont know how things are going to turn out. This is what I have found the most difficult - not knowing EXACTLY what is going to happen. Doctors cannot tell you as they genuinely do not know how each case is going to turn out.

Stay positive & enjoy the present

lessonlearned

Thanks Quackers. It is the experience and knowledge of kind people like you that is really helping me at the moment.

As you say I guess the trick is enjoy the here and now and try not to worry to much about the future. Worrying isn't going to make it go away.

Thanks again and warmest wishes to you and your family.

pennineman

Hi lessonlearned

Thought you might like to hear from someone with MS.

I was diagnosed 22 years ago but only stopped working this year after getting a good early retirement deal.

I haven't taken any drugs for my MS in all of that time but just try to reply on healthy eating and lifestyle.

Most people didn't know I had MS until this year.

Main problem is tiredness - but that I've handled by adjusting how I work to fit in with this. Like now: I've just finished weeding and pruning in the garden - I knew I'd be very tired and I am but I'm resting here keying this in!!

And although I was awake at 6 a.m. this morning, after a cup of tea I went back to bed where I stayed until 11:30!!

I just plan my day to try to accomodate what's going to happen.

When I was working this included changing to part-time working and moulding my job to fit my MS. (I was lucky here.)

Re Spain - possibly OK as with dry heat I'm usually not too bad but humid heat is a nightmare which I don't like - nearly had to come home from our UK holiday this year because of the heat . . . but that is unusual.

Do feel free to PM me if you want to know anything else about living with MS.

Hope all goes well on the 18th.

[Deleted User]

My mum has MS. She was diagnosed when in her 40s and is now in her 70s.

Main problems she has is with balance, tiredness and continence (her waterworks!). People with continence problems seem to think it helps to drink less.

This just makes for other problems. I've had many battles with my mum to get her to drink adequately enough to stop her getting dehydrated. She has even put herself in hospital before through not drinking enough. Fortunately she learned her lesson - but the hard way.

I could write a book on our experiences.

The thing to remember is to let the person decide what they want to do and how much they can do. One of the worst things I, and other family members found was in trying to get my mum to accept some help - so that she could conserve her energy for things she wanted to do or things she enjoyed.

Unfortunately my mum is the very stubborn sort - stubborn to the point of being a risk to herself at times.

There is an extremely fine line between trying to help the person and making them feel helpless.

That line is always changing.

margaretclare

Deleted_User wrote:

My mum has MS. She was diagnosed when in her 40s and is now in her 70s.

Main problems she has is with balance, tiredness and continence (her waterworks!). People with continence problems seem to think it helps to drink less.

This just makes for other problems. I've had many battles with my mum to get her to drink adequately enough to stop her getting dehydrated. She has even put herself in hospital before through not drinking enough. Fortunately she learned her lesson - but the hard way.

No, drinking less DOES NOT solve the continence problem.

In the 'black years' of the early 1990s I used to go away staying with old people in their own homes as resident carer/cook/housekeeper/chauffeur/bottle-washer/general dogsbody. And one lady I went to was 90, had had one knee replacement and was awaiting the second. She knew I'd been a nurse (still was, at that time) and she asked me how she could avoid the pressure sore she'd developed following the first knee replacement. (I have no idea how she got this, DH has had knee replacements and you're up and mobilising the day after, no sitting on your BTM! But she was a very heavy lady...)

Anyway, I told her that dehydration was part of the problem, you need enough fluids daily to keep the tissues healthy, not drinking enough can predispose to pressure sores. Her response? 'Stuff and nonsense! It's because nurses are lazy nowadays and don't go round rubbing bottoms with surgical spirit as they used to'. I explained that research had shown that 'rubbing bottoms' damages the tissues just under the skin and therefore can contribute to the problem. She wouldn't have it.

That lady drank nothing with meals and didn't drink at all after 7 pm. It was what he father - who'd died in the 1950s - had told her to do.

Drinking too little can actually irritate the bladder by making the urine too concentrated, and the bladder irritation can make the problem worse.

Margaret

lessonlearned

Just a quickie to say Hi and thanks to everyone for posting.

I am learning so much from all your replies.

Tomorrow is the day when we see my husband's consultant. I am sure I should be preparing lots of questions but so far haven't really thought far very ahead. I suppose until we know what we dealing with it's going to be difficult to think or plan ahead let alone which questions I need answers for.

The big one so far on my mind is this. Are our two sons (20 & 22) at risk?
That is definitely number one on my list to ask the consultant.

Any wish us luck (not slept too well past couple of nights). Funny thing is my husband seems quite well at the moment - although very tired of course.

Regards to all.

annie12

Hi lessonlearned, I have MS, I was diagnosed at 27 - I'm 35 now.
I go away in the heat & I'm fine unless it's humid.
I've found positive thinking to be the best medicine, sometimes it's hard to be positive with this disease, but it definitely helps. Take care & good luck xx