Does anyone have any experience with Multiple Sclerosis?

Benjamin D Green

Benjamin D Green

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Hello all,

My Fiancee has recently been diagnosed with MS, and I'm absolutely devastated. I can't seem to pick myself up, I had a not inconsiderable emotional meltdown at work and have been sent home for a week. They were very understanding, and we have good friends around us, but I can't stop thinking about it, and I worry about the future. I love her so very much, it crushes me to see her off balance and dizzy, unable to walk unaided without bashing into things and/or stumbling over. She's so independent usually, and she is taking the news far better than me. I know that it's not a death sentence, and it could have been a lot worse, but seeing her struggling is not at all great. I love her so much, and will stand by her through anything. I just wanted to know if anyone out there is in a similar situation. I want to be strong for her, I know I'm not the one who's been diagnosed.

I've not fired a shutter in anger since the diagnosis.

Any help, or shared experiences would be greatly appreciated.

Ben
 
My best friend was diagnoses with it a couple of years ago when he was about 32.

His was first discovered after he went blind in one eye for two weeks, and he had a brain scan that revealed scarring in the region associated with vision. The scarring eventually healed, or did whatever it needed to allow him to regain his vision, but he was left with a diagnosis of MS.

As he explained it to me, there are two types, and one lasts forever, and the other apparently fades away as you enter your 40's.

If it's any consolation, he obviously suffers some ill effects, but on the whole, he appears to be coping well, and you would struggle to know anything was wrong with him. I don't think it's something that affects his day to day living unless he's actually in the grip of a bout, if that makes sense.

He's got a good sense of humour, because he says he's glad he got it, because it means he gets to have a disabled badge on his car. I know he's not serious, but at least that shows it's not savage enough to remove his sense of humour.

I know his girlfriend was devastated, but she soon realised that, as you say, it's not a death sentence, and I think now they both just get on with it. He has days where he's a bit iffy, but that is followed by long periods where he feels perfectly fine.

I'm sure it'll be the same for you.

If you're having trouble coming to terms with it, you should find someone to talk to face to face, even a councellor, because illnesses like this impact everyone involved, not just the sufferer.
 
I'm sorry to here that. My mother in law has it and although she is now confined to a wheel chair (now aged 58) she has only just retired and enjoys going to football matches every week and lives a very full life.

Have a look at www.mssociety.org.uk for information and support.
 
My best friends sister had it. I won't go into specifics, and even I don't know the full ins-and-outs as even 15 years on it's very difficult for him to talk about it, but she ended up bed-ridden and basically a vegetable. She couldn't speak or feed herself, and sadly she ended up passing away at 25 years old due to complications connected to her condition.

most sufferers can still enjoy a good life, but be prepared that a very small minority of sufferers arent so lucky.
 
Depends on which variety you get. My cousin has it and is now house bound and is slowly losing the use of more and more limbs and speech is now slurred. A friend has it and she has the other kind which sticks around but isn't as severe. She can still walk even though she's had it roughly the same amount of time. What helps is a positive attitude. My cousin has given up really and it will just consume her.

Jim Sweeney's blogs and things about it are worth a read.
 
I come across MS fairly regularly in my job - and no two people are the same.

I have found that these people come to terms with the condition and generally (accept?) live with it as best they are able. The vast majority of them are really philosophical and most continue to see the lighter side of life - in fact, once again, they shame me into realising my problems are pathetic in comparison.

The people who live with / love the sufferer have always seemed to be really supportive and both try, wherever possible, to continue to adapt their lives with the condition - it does evolve, and live as 'normal' a life as the condition allows.

As has already been said there are specialists you can talk to - I am not one of them, but for me the love and support you give your lady will be one of the most important things to her.
 
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London Headshots said:
My best friend was diagnoses with it a couple of years ago when he was about 32.

His was first discovered after he went blind in one eye for two weeks, and he had a brain scan that revealed scarring in the region associated with vision. The scarring eventually healed, or did whatever it needed to allow him to regain his vision, but he was left with a diagnosis of MS.

As he explained it to me, there are two types, and one lasts forever, and the other apparently fades away as you enter your 40's.

If it's any consolation, he obviously suffers some ill effects, but on the whole, he appears to be coping well, and you would struggle to know anything was wrong with him. I don't think it's something that affects his day to day living unless he's actually in the grip of a bout, if that makes sense.

He's got a good sense of humour, because he says he's glad he got it, because it means he gets to have a disabled badge on his car. I know he's not serious, but at least that shows it's not savage enough to remove his sense of humour.

I know his girlfriend was devastated, but she soon realised that, as you say, it's not a death sentence, and I think now they both just get on with it. He has days where he's a bit iffy, but that is followed by long periods where he feels perfectly fine.

I'm sure it'll be the same for you.

If you're having trouble coming to terms with it, you should find someone to talk to face to face, even a councellor, because illnesses like this impact everyone involved, not just the sufferer.
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Not quite accurate. The two types are Relapsing/Remitting and Primary Progressive. Neither type just goes away when you're in your 40s (or at any other age sadly). If you have the former, you may only get one relapse every few years and you could go decades without one but it's always there, if dormant, and is completely unpredictable.

There s a 3rd variety called Secondary Progressive where someone originally diagnosed with Relapsing/Remitting moves on to the progressive stage.

As has been said, no 2 people are the same but certainly counselling is an option I'd advise. Believe me, it helps, whether you are the sufferer or a partner/relative.
 
Ah, fair enough, when I wrote it out, I did tell myself I'd quite possibly misunderstood him.
 
Sorry for your news. My mum has had it for over 30 years, relapsing-remitting and now secondary progressive. You should get in touch with your local MS society who can offer help and support. There is no cure as I'm sure you know, but medical science is so much more advanced now than even 20 years ago and new treatments and drugs may really help your fiancé. Make sure you keep your chin up for your sake and hers too.
 
was diagnosed in 2010 after a couple of years being in "limbo" as they say.
How long prior to that i've had it for, dunno. 5 MRI'S all clear, but a positive Lumbar Puncture & symptoms was enough for the specialist at Chester to confirm Relapsing/Remitting MS. My symptoms are a lot of neuropathic pain, mainly on the right side of my body, feels like my arm is sunburnt/skin being peeled & my right leg suffers from deep ache/pain in the muscles.
Most of this is controlled by medication, they help but the side effects are a pain to deal with them selves.
Had a few bouts of "feeling drunk", not nice at all with the last one being last summer.
Currently been signed off work since Feb 8th with optic neuritis & the headaches that come with it. Just want the Neuritis to clear up so I can get back to enjoying life as best I can.
My kids (10 & 7) have come to terms that daddy gets tired very quickly(fatigue is the real git for me, I'm on 4 day week due to it) so can't do lots of running round after them. Heat make things worse as well, so they went to Turkey last summer, I stayed home. My wife has been brilliant through this, though she took it a lot worse than me when it was confirmed.
one side effect is depression, I've been very very low from this on a few occasions. Family & good friends really help.
The real help I've found is the MS nurses, these people are a lifesaver & deserve untold praise .

Robb
 
My wife has it , she suffers with numbness on her lefthand side amonst other things , she`s going to need your help depending on the way it affects her ,when she first found out she spent quite a bit of time on forums connected with it and on some of them the husband in one case left his mrs saying he was too young to be stuck with a sick wife, what a ba****d , try to get as much help as possible , i hope it goes well for you both , if you want to ask questions feel free to pm me if you want, Harvey
 
Ben, as you have already found MS will effect different people in different ways. With my own (admittedly limited) experience of MS sufferers, it is very much a day to day illness.

Be strong for her and I am sure you will both make the most of what life has thrown you.
 
zoidberg said:
The real help I've found is the MS nurses, these people are a lifesaver & deserve untold praise .

Robb
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No argument from me on that one. I was in a group that delivered a petition to No 10 in 2006 to stop them cutting MS Nurses. I'm in the middle, blue shirt. ;)

ms.jpg
 
fabs said:
No argument from me on that one. I was in a group that delivered a petition to No 10 in 2006 to stop them cutting MS Nurses. I'm in the middle, blue shirt. ;)
Click to expand...

We have 2 MS nurses to cover South Lakes & North Lancashire. They are desperate to get funding for a third nurse, even on a part time basis. Crazy world. Same with drugs. I have Sativex for my legs but have to travel to another PCT to get it as mine won't pay for it. Good old Post Code Lottery.
 
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