[size=3][font=Arial][color=#6633FF]

[size=5] Hi everyone, I have a brother who has been diagnosed at 46 year old, as having Marchiafava-Bignami Syndrome which is a state of dementia and he has a chronic state of this disease.
I would like to recieve any replies from ANYONE who may have had any personal experience of this with a family member or any nursing staff who may be able to help with knowledge of this awfull disease.

As a family we have all been scratching our heads, searching the internet for imformation about it but alas there doesn`t seem to be much about this anywhere in the world it seems as the diagnosis is usually made at autopsy stage so there are not any personal veiws to be read from people who have dealt with this horrifying syndrome

ANYTHING at all will be gratefully recieved

Carolyn (Cazz )

I see you are a typical male.....thinking with your dangly bits and not your brains.... guess your brains are in your underpants hey

THANX TO YOU WHO UNDERSTAND HOW MUCH OF A P**TT THAT ORPHODAEOUS IS......... DON`T NEED IDIOTS LIKE THAT RIGHT AT THIS MOMENT
cheers

According to this site theres only been 150 recorded cases: http://www.patient.co.uk/showdoc/40001259/

Nadhir is looking for you.

Although you have probably found this site already if you have been searching the internet, note the last two sources listed in the bibliography at the bottom of the page: an article entitled A case of Marchiafava-Bignami disease with complete recovery: sequential imaging documenting improvement of callosal lesions, apparently from Japan; and an article entitled Marchiafava-Bignami's disease with a favourable course, from France (in French). You may wish to contact these researchers -- particularly the French if you live in the UK -- for details of the reportedly successful treatments.

And note the following excerpt from the page:


Link: http://www.emedicine.com/NEURO/topic204.htm

All the best.

[color=#CC33CC][size=7]

Hi to you all who have posted to this topic........... I just want to thank you all and as you realise now there is not a lot about this disease but all that has been quoted by yourselves I had already spent hours reading through the same items and taking it all in.

We have been told to day that my brothers prognosis is not good and his life span now is 2-5 years. and definately NO chance of improvement and WILL get worse but we as a family will support one another through.

What a waste of life......... 46 years old and not likely to make it to his 50th year

Yes, I have said myself it is self inflicted but with many alcoholics there are underlying psychological problems and my brother has had many of those over the past 20 years...... spent 9 years in the Airforce and fought for our country in Northern Ireland and the Faulklands.......... and the mental problems that come with fighting wars are quite obvious to say the least...... just that some people cope better than others.

Anyway, many many thanx again for your replies.

Carolyn

Zoro...I'm not trying to be nasty or anything, but what can we do?...and there's every chance it was self inflicted.


There's no real advice you can give, we can sympathise of course...but what's the sympathy of a stranger worth?

Will caz join us as a member?...or was this it?

Ok.

OK guys that enough of the smart arse replies.......... I need concious helpful replies so don`t need asshole smart alec insults from guys like you.............. don`t bother posting sick notes that are irrelevent to the cause......... you guys obviouslyDO NOT have anything worth talking about cos you all talk our ur pants........... as i said before nothing but brains in ur boxers......talking out your bums.

Pick on someone who care`s a shite

Look, Cazz, I'm the one who admonished the others to refrain from posting anything other than topical posts respectful of your serious and tragic situation.

My "ok" in reply to HQ -- who is a moderator -- was merely an acknowledgement that I am not a moderator and thus have no power to determine what is posted.

God bless.

Sorry for the delay in this reply, I had to attend to something here.

This is the internet. Every posting takes it's chances, the fact that you have a sad situation to deal with is no gaurentee you will recieve sympathetic replies.

You've asked us for information on a topic that I doubt anyone has ever heard of before. So the best we can do is google for it....something you could have/ should have done for yourself before shouting to the world "help me". We are unlikely to come up with anything you could not have found out for yourself.
What did you really expect of us?

Your brother seemed to have lived his life as he wanted to...and will pass on without knowing he's going....there are a hell of a lot worse ways to have spent a life and pass on.

And there are few real men that would begrudge a laugh or two (even at their expense)...so lets not make his name a subject of frowns around here. OK?

Well said Harlequin

I WAS NOT LOOKING FOR SYMPATHY HERE AND I DID LOOK INTO THIS BEFORE ASKING FOR ANY OTHER ADVICE OR WHATEVER U THINK IT IS............. YOU ARE OBNOXIUOS AND SELFISH TO POST THINGS THAT ARE HURTFUL TO PEOPLE WHO ARE GENERALLY WANTING INFORMATION HERE.......IF YOU HAVEN`T GOT ANYTHING WORTH READING ABOUT THEN F * * K off and bother someone else...i`m not interested in selfish people and their opinions

Hi Cazz,

I'm a newbie here too and just strayed on to this thread. Sorry can't help with anything constructive - as you say, this is a rare condition - but you need a shoulder to cry on as we all do sometimes. Whether it's self-inflicted or not (how many smokers out there...?) it doesn't stop a guy's sister from grieving, and OK we can't do much online as cyber-strangers, but we can at least give you a bit of support.

This is a really great forum but there are others with different communities which might be what you're looking for. One of the daily tabloid newspapers has an online forum "Daily...?...Online" (am I allowed to put that?) which is full of genuinely sympathetic ladies offering virtual hugs and advice and that's probably what you need right now.

Hope things work out.

there are some nice members here honesty, sorry i have not heard of any more info or any site where you may meet others with the same problem, i hope you find somewhere like that,
the site hibiscus mentioned may offer support, it must be worth a try
if you just need to talk, we are here

hi cass, i have just looked at the daily mail site, do visit it


great find hibiscus

The DM site is great for info and support, *but* its moderators are a bit anal - you can get banned for not very much...I was, for talking about something sexual without using coy euphemisms - I was quite hurt because I enjoyed it - the site I mean lol ...and here I am recommending it...they ought to be grateful! But it's well-organised and easy to navigate - no pics though...

But don't worry Cazz, your problem is "acceptable"...let us know how things go.

Well that's quite a sweeping character analysis you've chosen from a few words from me.

Now it's my turn.


Where were his friends and family when he started his drink problem and he needed help and support?


It's too late to do anything now isn't it?

So until you can convince me that you can look in a mirror and say to yourself you did everything you could for your brother....don't call me selfish and obnoxious.

Should you succeed in convincing me that you did all you could I will apologise fully and handsomely in bold and pin the damn thing in this section.

But until that time my opinion is as valid as any.

[edit] I've asked the other mods and admin to leave this thread alone. Cazz...you have center stage.

thanx very much to you all who offer a little shoulder for me.....I do find it a great help to know there are fine, genuine people who will just listen and lend a smile I will visit the site recommended by hibiscus and look forward to chatting to all who I find there....... I also offer a sympathetic ear too, have done as a person all my life so Good Morning to you all have a great day....... xxxxxxxx

Hi Harlie.............. sorry if i stuck a little note in your head and upset you.......... WE as a family HAVE done all we can in the past 10 years to help my brother with his addiction to drink, meetings with AA..... self help groups etc........ so stop this back biting and shake hands and be friendly........... It was ORPH that started this, with obnoxious replies to my general plight and call for information.... with what he put by answering my first thread with something found to be abusive and totally NOT funny.....I was NOT asking for sympathy just some information IF there was any there............ THANX

well if nothing else, ive heard of an illness that i never even knew of before. Looks like this thread is gonna get pinned now too.

Also the people that decided since cazz was a newbie, her post was gonna be a one off flash in the pan post, they should apologise for trashing this thread, wasn't really a good way of showing her what this board is really like was it now.

All the best for the future cazz.

Not too sure about that yet myself.



Don't worry about me, my emotional status is of no concern.

Where is he now?

size=4]

Cheers Easy............ nice to know there are some people out there who are caring and conciderate

NOT many of your type about these days

Can Machiafava-bignami syndrome set in in 10 years?

Why dont you read about it and see

Yes, theres a case history here about a man who had been alcoholic for 10 years, not the only reference in this site to it not nescessarily being irreversable. B complex vitamins and folic acid apparently have a positive effect on the clinical outcome. http://ajnr.org/cgi/content/full/24/2/249

Nutrician appears to be strongly linked to the condition. That is nutrician to the brain, obviously. Drinking causes liver damage and if the liver isn't working it can effect nutrients going to the brain, ie the nutrients don't get to the brain. Problems with the brain are often actually symptoms of problems with the liver. Modern medicine has nothing for damaged livers, on the contrary if someone having that condition was sectioned they would be given drugs which damage the liver further. There are herbs which are good for the liver - Milk Thistle being one, Devil's Claw apparently being another if that site on Random Thoughts is correct. Hence I would prescribe Milk Thistle and perhaps Devil's Claw, probably safer to speak to a practitioner before mixing things, in conjunction with the B complex vitamins and Folic Acid, to help the B complex vitamins and Folic Acid get to the brain.

Impressive, well researched answer there orphadeus.

A 'friend' of mine has problems with piles.

I ....sorrry ...HE has had them for a few years now.

What do you recommend?