husband diagnosed with MS - advice please

disguise

Sorry to hear about your husband's MS. My H was diagnosed 7 years ago he is 52. He lost the sight in his good eye and found he was dragging one leg. He has secondary progressive which means he is very slowly getting worse though he is on a course of Mytox which hopefully will stabilise it.

I found Jooly's Joint http://www.mswebpals.org/ a great help when he was first diagnosed and received emails from carers all over the world. The MS society is also excellent. They keep you up to date on treatment and drug trials.
I'm suprised to hear that Spain is a good place for MS sufferers as heat makes my H symptoms worse. We'll have to give it a try.

As for benefits he should get DLA, incap is means tested so that will depend on your income.
If you want to chat off forum, feel free to email me

Ted_Hutchinson

disguise wrote:

incap is means tested so that will depend on your income.

Incapacity Benefit is NOT means tested and you can have as much savings & capital as you like without it affecting your IB amount. The only context in which it may be thought that IB is means tested is when people take early retirement on ill health grounds. In this case your works pension will be set against the IB and for every £1 of pension over £85 a week you lose 50p
so those with Pensions under £85 get full IB
those with Pensions £95 lose £5 IB
those with Pensions £105 lose £10
those with Pensions £115 lose £15
and so on till the IB runs out.

This is why although the Government claims there are 2.7 million IB claimants in practice only 1.4 million GET PAID IB. There are a lot of people who have paid their NI contributions on the understanding that when they were ill they would get support from the system only to find that the rules have been changed and although they have a full NI credit record they can be awarded IB but not receive any.

But apart from the Pension Income IB is not means tested, you've paid towards it, it's your right to receive it whatever you other saving/capital income.

lessonlearned

Good morning all

Thanks for your replies - you are all so helpful.

Ted you are an absolute mine of information - thank you so much.

Kenshaz - doesn't matter about being "off topic". Thank you for thoughts and "positive vibes". I really appreciate them. Good luck & warmest wishes to you both.

I will be phoning the consultant tomorrow to try and arrange a meeting - I understand that all the tests are back now - so hopefully will know a bit more soon.

For me it's the uncertainty that is so difficult. I'm hoping that once things are clearer I will be more able to think.

Bye for now and thanks again everyone.

kenshaz

Our thoughts will be with you,and we both send our concern and shared feelings .

lessonlearned

Just to let you know we now have confirmation that all the tests are back and we have a meeting with the consultant on October 18th to discuss things and find out what's what.

We've had to go privately (luckily the insurance should pay if not then I will pay the consultant's fee myself) because if we wait for the NHS it will take at least 10 weeks for an appointment. Frankly, I don't feel that I can cope with waiting that long. For me the worst is the uncertainty of everything. I guess I'm a bit of a control freak.

I've also had my skin cancer op set for 21st November (it's not serious just a bit scary) and I feel better now that I know I don't need a GA and can get it done with only a local anasthetic. (I know, what a wimp!!)

We both feel that we may as well get on with our original plans (as far as possible anyway), however, perhaps the timescales will need to change.

We had hoped that my husband would retire at 55, however if he cannot work through till 55 because of the MS it would be better if we downsized sooner rather than later. To this end I have started preparing our house ready to go on the market next Spring.

As you can see I'm feeling a lot calmer and have been able to think and focus. Looking at the positive, if he has to retire early we will have so much extra time together.

Anyway just thought I'd let you know how things are and will keep you posted.

One thing I would like to say is how wonderful people have been - both here in the MSE world and outside in the "real" world. From family, friends, neighbours, doctors and health professionsals, even our local council office when I applied for help with council tax!! - we've had nothing but help, support and encouragement.

It just goes to show - despite all the doom and gloom we hear the world is still full of kind, helpful and supportive people.

Anyway - enough or I will get maudling!! Perhaps a stiff G&T while I watch Trinny and Susannah.

G'night all.

seven-day-weekend

disguise wrote:

, incap is means tested so that will depend on your income.

Only in respect of occupational pensions; any other income or savings is disregarded.

My husbands IB is reduced by £27 a week due to his Teacher's Pension.

lolly-i-pop

my advice would be -

listen to the health care proffessionals. If you have nice ones, they really will go out of their way to help you, and offer you all the support you both need.

Many people cope with MS amazingly well with either physical or emotional support from families, friends and nurses, ot's physios,dr's etc.

Good Luck!

Quackers

margaretclare wrote:

This is a very unpredictable disease and you tend to hear the worst-case scenarios. Don't make any decisions in a hurry.

I'd just like to echo this comment.

My husband was finally diagnosed about 3 years ago (soory - I'm hopeless with timescales:o ) - aged 36.

He is still working full time & at his last appointment was told he hasn't 'worsened' in the last 12 months and things are looking really good for him.

The only thing he suffers with at the moment is tiredness - this is actually really hard to deal with as he never has the energy to do anything once he has been at work all day.

Anyway, lots of love and luck for your LONG & happy future together xx

oh, and dont forget to report back on Oct 18th to let us all know how it went

Ted_Hutchinson

Quackers wrote:

The only thing he suffers with at the moment is tiredness - this is actually really hard to deal with as he never has the energy to do anything once he has been at work all day.

Treatment of multiple sclerosis-related fatigue: pharmacological and non-pharmacological approaches.

The results of this study show that acetyl L-carnitine is better tolerated and more effective than amantadine for the treatment of MS-related fatigue.

Acetyl-L-Carnitine 500mg - Our product is to be taken 3 times daily to achieve the desired dosage. RDD 3 per Day - 90 (size R)£ 7.45

this also works for PPS, ME, CFS type fatigue.

DIRECT-MS has good nutritional advise for MS.

tiamaria

Just wanted to add - a good friend of mine was diagnosed with MS about 15 years ago - she was gutted. HOwever, she's still the same as she was then, she does take a lot of medication and occasionally has pains in her joints but she does very strenuous DIY and no-one has any idea she has an illness. SHe continues life just as before and admits most of the time she feels fine.

She does get DLA.