Dealing with friend's MS

LegacyUser

Hi guys, I'm looking for a bit of advice, a good friend of mine was recently diagnosed with MS. His balance is very bad from time to time, and he looks as if he is drunk he staggers so much sometimes which can be a right pain to him if he wants to go to a pub/club etc. The balance issues are intermittant but all the same cause a lot of discomfort for him. I have looked up a lot of sites on MS, but they all seem a bit vague as the disease affects different people in different ways. Anyway I'm not looking for medical advice but any good links to some would nonetheless be appreciated.

My friend told me in confidence, he's still coming to terms with it and he doesn't want anybody else to know just yet which means I can't even discuss it with my closest friends nor will I, but I'm finding it a little bit hard to deal with because he's in his early thirties and you never really think it will happen to someone you know. I have been spending a lot of time with him over the last couple of weeks, going to catch some bands and just getting out and having a good time etc. so I'm trying to be there for him all I can, I just wish there was something more I could do or say to help him cope with it all. I feel a bit helpless really, he's not the type of guy who would go to any help groups or anything like that and would probably be slightly offended by such a suggestion. Has anybody been in a similar situation, any suggestions on what I can do to help and support him without making him feel like an invalid??

catspring

i'm so sorry to hear about your friend. it must be awful having to come to terms with something as terrible as ms.
you will prolly have already visited this site, but here is the link just in case:
http://www.msireland.com/index.html
good luck to both of you

m1ke

I've got some close relatives with MS spanning the generations from young to old in my family and some family members who used to be previously heavily involved in the MS society.

It's true that the virus absolutely treats people in different ways. A very very close relative was diagnosed and given a very short time to walk and a very short prediction of life span..... 22 years later she remains in perfect health and totally unaffected - things could change at any time but they haven't yet and that's what matters. My grandfather similarly was diagnosed in his twenties, he was an extremely resillient man and lived for 25 years in a wheelchair into to relatively very old age considering his afflication with unfortunately very poor health and a very tough life. Other friends diagnosed with MS went rapidly downhill and died within maybe 5ish years of being diagnosed.

You can go through bad spells, but you can bounce back even from wheelchair bound --> to being able to walk. I've had to go through a lot of personal **** too from other members of the family treating the one afflicated with MS as an invalid... constant low key stuff, and to be honest it was all caring stuff and luckily after 22 years its almost 100% worn off. Just never treat them like an invalid ever, just don't do it... however you treated them before continue to treat them like that now. Be open with them and ask for feedback from them... be honest with them, it's something they'll appreciate since they've taken this great step to confide in you.

It affects everyone differently but what is important is that your friend doesn't yet know what the future holds and living a great life is still possible, it's something I would never wish upon anyone... i'll stop preaching because tbh I know jack**** about that i've never had to face this sort of challenge in my life and I hope I never do but here's a good thread : http://www.boards.ie/vbulletin/showthread.php?s=&threadid=73781

Jak

I had heard through Scuba Diving, that the recompression chambers we use for people (just the one in Ireland afaik) can be used to delay the onset of the condition.

I know this isn't much use, but any sort of hope or something to investigate could be helpful.

m1ke

'I had heard through Scuba Diving, that the recompression chambers we use for people (just the one in Ireland afaik) can be used to delay the onset of the condition.'

- take everything like that with a pinch of salt, they're coming up with new treatments everyday of the week but they just don't know enough about the virus yet. Also heavy courses of drugs and the likes can have nasty side effects, wouldn't nesessarily believe everything doctors say either. Best really to get involved in and subscribe to MS Ireland and find out other peoples experiences and come to a personal conclusion about what treatment to pursue of course with the advice of professionals.

They haven't even pinned down how people get the virus yet, it could be a complex mixture of environmental and genetic reasons... no one knows except that there is an environmental element.... it's really inconsistant.

LegacyUser

Cheers guys,

Well m1ke we've just been carrying on the same as normal really, you seem to have been around quite a few MS sufferers and I was wondering if you knew anything about the length of time from the initial diagnosis to treatment. My friend was diagnosed about a month ago and the hospital have given him his next appointment which is in blooming August!! Meantime his balance etc. has been deteriorating a bit worse each time before easing again. It just seems like an awful long time when they haven't even diagnosed the exact type he has yet. I've told him to ask his own Doc to see what he thinks anyway as my friend wasn't happy with having to wait another 5 months either. In the meantime, cheers for the info!!

m1ke

Sounds about right 5 months unfortunately with the demand these specialists are in. I know some people who have been waiting over a year(down the country tho diff if you're in Dublin), probably have to do a few MRI's and a lumber puncture and a few other things - and remain in hospital for a few days while the tests are being done. It depends though one of the quick MRI's could show up with all the information needed. The results on the more complicated tests would be sent away and he mightn't know anything for a few weeks after his appointment (up to about a month). All ye can do really is keep seeing the doctor and if things get much much worse - such as loosing all function, which can happen and be regained periodically, inconsistant stuff, then maybe press on being seen sooner.

Maybe the doctor would prescribe some sort of steroids to stop the inflamation in nervous system if it got really bad..... but best to stay away from steroids or cortisone type stuff for aslong as possible. I know some people who never take any treatment unless they experience symptoms, and then once the syptoms go they stop taking the stuff. Once again, the treatment is a personal thing and sometimes its not much good in slowing things down and sometimes its not needed at all. But hey, don't listen to some guy on the internet... makesure everything is run through a professional.

I know a lot of wierd things can happen in the early stages as some sensory messages don't get sent back to the brain... really the only thing to do is keep seeing the doctor and reporting on how the symptoms are progressing or easing off and asking for advice from them.

LegacyUser

Dawntreader and m1ke I could hug you both (don't worry I'm female L), you've addressed a lot of issues I've been thinking about there. I've known this guy most of my life so it just got a little overwhelming when I first found out. That's the thing with the boards, I can sound off a bit to people like you and get some feedback from people who know what they're talking about. A lot of our mutual friends are the macho type who would probably just ignore the issue as if it didn't exist which is probably the other extreme of the mollycoddling which would drive him mad. He told me the other day that he really enjoyed going out with me and just talking to me over the past couple of weeks. Another good friend of his also knows and the three of us have just been carrying on as normal for the time being, going out and having a laugh. He's living at home so his family are there for him as well.

Anyway tanx again guys, I'll be sure to check back again!! xxx

Selik

My Dad has MS and has done for as long as I can remember. I'm 21 and he was diagnosed with it a couple of years before I was born afaik. I didn't really take on too much until I was about 6 or 7 when my Dad would need to use a walking stick and drive an automatic vehicle(spasms and shakes prevent safe use of a normal manual vehicle, I think). He then progressed to a wheel chair and at the moment he's in care as he's completely unable to look after himself physically, although mentally he's still as sharp as ever. MS is a progressive illness in than it gets worse and worse. Unfortunately at the moment there aren't drugs that will completely cure or halt the effects although I think that there are some drugs (expensive) that can slow down the disease.

If you ever want any advice or just wanna chat feel free to email of PM me.

misswex

God I didn't realise that so many people on this board have been affected by MS. My mother has MS, she was diagnosed when I was 12 - about 12 years ago!!

At first she was in stage 1 - attack and then remission but they now reckon she is in stage 2 - progressive decline!!

Anyway, I just wanted to add my support and say, just be there for your friend. Nothing else to add really as everybody else have covered it pretty well!!

By the way, there is a new drug out called Beta Interferone, its an injection that you have to take every second night but its meant to stabilise your condition. Its only been out in the last couple of years but hopefully it will help

smiles

One of my mums friends was terribly ill about 7 years ago and at the time they thought she had a brain tumour, and then it all cleared up.

Unfortunately a couple of months ago she started getting weird spells again and was told it was a hormonal problem.

My mum actually convinced her to change doctors, and one of the things that came out was that she was diagnosed with MS years ago, but she'd never been told, and its coming back again.

<< Fio >>

misswex

She was diagnosed for 7 years without knowing, that is unbelievable!!!

Yeah my mother was given her last rites one time because they thought she was after having a brain haemorrhage but thankfully that wasn't the case and she pulled through

Well she obviously is still in the attack/remission stage and I suppose she was lucky that she was in remission for 7 years!!

At least now she can see a neurologist and get herself sorted out, they might even put her on the new drug!!!

FreaK_BrutheR

My twin brother's got MS and is on Beta Interferone. It seems to be working well enough in that he's had only wooziness but no attacks in the last ages although he did have one while on the drug.

Anyway its hard to deal with I know... my brothers a testiment to peoples will and courage... he lives life to the full at all times and indeed beyond my living my own life and me fit and well too.

Anyway good luck

Mark