Multiple System Atrophy (MSA)


#1
I have just learnt that my wife who passed away last August actually had MSA rather than straight Parkinson's. It is often difficult to distinguish between the two conditions and in this case it was confirmed by the Parkinson's UK Brain Bank to which she donated her brain.

But rate of progress of MSA and the nature of the symptoms raise issues beyond those raised by straight PD. There are enormous challenges to carers. Could there be a separate topic for MSA so we could talk about them and give mutual support? Are there many who read this forum who know that they or the person they care for has, or is suspected of having, MSA?

#2
I would like to see a seperate topic on msa ,i think learning and reading about this would give everyone an in sight on the information that is avaiable about msa.

#3
Hi.

With the greatest of sympathy and respect this is a Parkinson's forum, and although it's possible - in certain cases such as yours - to confuse MSA and Parkinson's, they are separate conditions.

They therefore (imho) require discrete websites and forums.

If we were to expand this forum's brief to include MSA as well, I suspect many members would turn away, whilst others may find the topic extremely worrying.

Take care.

Ray.
.

#4
Hi Ray,
I,m afraid i see things differently.Amongst alternative names for MSA is Parkinsons Plus.It is definitely in the same zone and is an off shoot of Parkinsons as far as i can see.When i asked my Neurologist about MSA a year or so ago she said "oh,you mean Parkinsons plus"and she treats people with MSA,it comes under the same umbrella.I feel the condition has more right to appear on this forum than those which have no link with pd whatsoever.
As yourself and others have said in the past,if not interested avoid visiting the thread.To make people feel segregated because they do not have straight forward ordinary Parkinsons i believe is harsh.
All the best
Titan

#5
i have to agree with Titan. these other diseases are very rare and the number of people would be very small. they couldnt really support much of a forum themselves and i think they should be made welcome.
the differentiation between diseases is not always clear cut or unchangeable - perhaps pd itself will one day be classified as several diseases - and these diseases are at least in the same 'family'.

#6
Its been a long time since I last posted on the forum so perhaps I should introduce myself again on the appropriate page later. Just wanted to say on this thread that I was originally diagnosed with PD in Sept 2008 - however as I didnt respond well to Sinemet and Madopar and the fact that my falling episdodes were much more frequent than should be expected in PD - my diagnosis is now PSP (progressive suparanuclear palsy). I would also hope that I can still feel able to join in on this forum and not be sidelined - its scary enough having PSP or MSA as it is. love SueW xx

#7
According to the Memorandum and Articles of PDS (now known as Parkinson's UK) all the parkinsonisms including MSA and PSP fall within the charity's remit. I have not got the chapter and verse to hand so maybe the moderator could provide the reference. MSA has about one fortieth the prevalence as straight Parkinson's and so I think it would be good to have a separate topic that just those affected by MSA could go to.

Bear in mind also that it is very difficult for neurologists to distinguish between PD and MSA and it can only really be confirmed post mortem. But because the life expectancy is very much less than for PD, and the symptoms are more profound than those of PD while having much in common, people with suspected MSA and their families are confronted with some particularly taxing dilemmas. That is why I think the Parkinson's UK Forum should facilitate a topic on MSA.

#8
Titan / Turnip:

I accept your reasoning, and am persuaded to change my stance.

I have no problem with this issue being included here.

Take care.

Ray.

#9
According to the Memorandum and Articles of PDS (now known as Parkinson's UK) all the parkinsonisms including MSA and PSP fall within the charity's remit. I have not got the chapter and verse to hand so maybe the moderator could provide the reference. MSA has about one fortieth the prevalence as straight Parkinson's and so I think it would be good to have a separate topic that just those affected by MSA could go to.

Bear in mind also that it is very difficult for neurologists to distinguish between PD and MSA and it can only really be confirmed post mortem. But because the life expectancy is very much less than for PD, and the symptoms are more profound than those of PD while having much in common, people with suspected MSA and their families are confronted with some particularly taxing dilemmas. That is why I think the Parkinson's UK Forum should facilitate a topic on MSA.




I agree and welcome to the form :grin:

#10
Has this been set up yet?