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Experiences of Multiple Sclerosis(36 Posts)
My lovely friend has just been diagnosed with MS. She is understandably, very upset and has been googling (always a bad idea !) and has been reading all about the worst case scenarios. She is very active - does lots of sports etc. and is convinced that side of her life is over
I have no experience of MS but would really like to be able to try and make her feel better, if at all possible.
Is any one willing/able to share any positive stories ?
My dh was diagnosed about 4 years ago, and just like your friend, was devasted. However, it appears that he'd 'had it' for about the last 20 years according to a variety of symptoms which had never been connected before.
Moving on... he doesn't take any drugs, you'd never know if you met him ( most folk have no idea- we've kept it mostly to ourselves.) He does everything he did before- the only concession is not to push himself to the extremes. I know he's lucky, he refused to find out more (I did all that and answered any questions from him- scared the ** out of me)
The way he looks on it- if he had diabetes or a similar hidden illness- you wouldn't be asking every day 'are you all right' 'how are you today'- condescending voice. So he just gets on with it until a relapse takes place- and that's happened too, but we deal with it at the time, according to the symptoms.
Be supportive, be there, be prepared to listen, be positive, be the good friend that you are.
My DH was dx about 10 years ago.
Like sams DH he had had it for years but didnt realise.
I wish he didnt have it, he wishes he didnt have it but we are fine.
His main problems are chronic nerve pain and the fatigue. His balance is ok but not brilliant.
He works, he drives, we have had 2 birth children and adopted one since his dx. (we already had two birth children)
With MS you have to try not to project ahead. Its fairly pointless because the illness is so unpredible and is so different in each person.
I know I am not the one with it but me and OH reckon its not the worse thing in the world. Its certainly not the worse neurological disease to have.
I support him but i do it on the quiet if you know what I mean. We just sort of ignore unless we cant.
works for us.
Hey, your friend will be in a dark place... A lot of people just think wheel hair when they hear ms.... There is some mad statistic that only 20% of ms sufferers end up needing one.
My brother has ms for nearly 9 years and is now 33... It was a huge shock as he was so young when diagnosed and we knew nothing of ms and feared the worst.
9 years on he's had one relapse since diagnosis which attracted his sight but now his sight has gone back to normal. He is very well and on no meds.... He eats healthily and exercises a couple of times a week.
Tell your friend there is life after diagnosis it's just like a mourning for the health you once had. The biggest thing is never knowing what yourfuture holds and when it will strike. Stress can make symptoms worse. Hope ghat helps.
My SIL was diagnosed about 6-7 years ago. She was obviously frightened and upset at first, but actually she has minimal effects on her life so far. She does have relapses from time to time that make her legs 'heavy', as I understand it, but it doesn't affect her much otherwise (to my knowledge anyway). She is currently studying for a professional qualification in quite a physical job
'she has experienced minimal effects', sorry.
Agree, wheelchairs are great! They beat the pants off not-doing-stuff-because-it's-too-tiring.
And she shouldn't imagine she's "not allowed to use one cos she's not disabled enough yet" - think of all those people who strap 4x4's to their arses to drive 200 m, they don't feel the need for anyone's permission!
Shopmobility in many large towns do cheap hourly hire of wheelchairs and mobility scooters to anyone wanting to spare their aching feet, no medical eligibility involved.
On adapting to disability generally (mine's not MS), my quality of life shot up when I started seeing myself as a disabled/sick person who could do a heck of a lot, rather than as a well person trying to carry on as "normal" and continually experiencing failure.
If you build realistic adaptations into the fabric of your life, you can just get on without it taking up headspace all the time. Same as getting contact lenses - you do have to clean them and put them in, but then you forget about them.
Btw, I'm not minimising the seriousness of her DX, or how lousy it is to lose favourite activities. Hope things go as well as possible for her.
There has also very recently been an exciting breakthrough in potential MS treatment, it will take a few years but sounds very promising.
Currently child juggling but will post this evening-I'm 12mths post first incident and doing ok l
Just seen this - like Seashells, I will come back in the evening. Got to get Dds ready for the first night of their panto.
Best wishes to your friend Tilly. I know how hard time around the actual dx is. xx
OH has just applied for a scooter. Cant wait! Now he has no excuse not to do the shopping. The kids are going to love it
I know its a big step for him, he is a good bloke. I just want us to do some things as a family and feel that a scooter can mean we can go to the park together. But he needed time to make the decision.
I can appreciate the huge benefit of wheelchairs/scooters etc, but this is from experience... Please do not mention the mobility shop/how great wheelchairs are to your friend... At time of diagnosis she will NOT appreciate it.
Ok. Re wheelchairs, that was ALL I could think about as soon as they mentioned MS, it took research, talking to my consultant and family etc reading up to convince me I would avoid being in one (especially within 12mths which was what I feared, irrationally). It is often a focal ponint for the fear associated with diagnosis.
I have so far had no relapses, but the diagnosis alone is in someways the hardest thing to deal with. We are doing slot of soul searching and reassessing lifestyle (especially my exhausting high stress profession). This is likely to be a common conversation with your friend as the unknown, the unpredictability of what the future will hold has been the hardest thing for me to deal with personally.
She is lucky to have such great support-you are a lovely friend
I can see that, but I had no previous history, just sudden onset severe visual disturbance, so relieved it wasnt a tumor or haemorrhage, but then dealing with a whole new scenario.
It's such a different experience for each person.
When I was tested for MS last year, I discovered this forum which is fab. Lots of people sharing experiences and answering questions.
My OH had weird symptoms for ages but then lost all sight in one eye. In a way it was lucky, it meant he got a quick dx. He got most of the sight back later.
He cant smell anything though. If I leave him in charge of two in nappies for a few hours it can be pretty mank when I get back and he hasnt noticed
My mum had MS - was bad on and off for about 12 years when she was aged 32-44, and in retrospect she'd had a previous episode in her early 20s which had resulted in her spending months in a mental hospital.
Once she got to 50 and happened to take life more slowly, she's had almost no problems - she's now 70 and very fit, but has thankfully given up driving as stuff on her left side just doesn't register a lot of the time, like walls.
She had a stick and a disabled parking badge for a few years when it was bad and used to collapse on the floor a lot. A mobility scooter might have helped only her arms were worst affected and she wouldn't have been able to get it out of the car.
She used to rant a lot about the MS Society ads making people think MS was usually fatal, when it isn't.
Thank you so much everyone for sharing.
I met my friend today and she is really down - she is a single mum and is worried about being unable to look after her dd . She has an appointment with her Neurologist on Tuesday so I'm hoping he'll be able to put her mind at rest somewhat, although I can see the whole unpredictability of MS will be really difficult for her to deal with.
Riven - I think there is some relief at being diagnosed. She's had episodes of blurred/double vision on and off for a few years and she was convinced she had some kind of brain tumour.
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