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.

The biopathologies of the two diseases are different but they have a lot in common. Much less research has been done on MSA because it is much less common than PD. If anyone else is affected by MSA, would you be interested in discussing issues around research into it in this forum? Are there instructive papers and articles on MSA that could inform us about what research has been going on and whether there have been any recent encouraging results? After all, the treatments for managing MSA are far less effective than those for PD. Could the Parkinson's UK forum moderator tell us about work on MSA that the charity has been supporting?

#2
Firstly, and most importantly, please accept our sympathies with regard to your wife's passing. It must of been a hard time for all concerned.

I have little knowledge of this condition, and it hasn't been discussed (to the best of my knowledge) on this site.

Maybe we should all do some research and publish any relevant web pages etc.

Many minds might get to the bottom of this

Chris

#3
I am so sorry to hear of your loss. It must have been very hard for you. Perhaps, this could be the beginning of a thread devoted to M S A. There is a need for it. I can remember one member announcing he had been told he had M.S.A, not Parkinson's so there are members who have just been diagnosed, or whose carers are members, but feel, even though each person with Parkinson's is different, that they do not quite fit in with a general Parkinson's group.If there was enough need perhaps we could ask for a section to be set up for Parkinsonisms.
I wonder if any one else remembers this member,called Landlord,I believe.I think that before his diagnosis he had run a pub in the West Country.I still think about him and his wonderful sense of humour and the way he made the announcement of his diagnosis of M.S.A. It moved me deeply.

#4
If anyone one wants to learn more about M.S.A and how it presents,the website We Move gives a good overview as it does of other Parkinsonisms.

#5
Hi droflet,
A good number of months ago,perhaps even a year,i broached this subject,both concerned of the possibility or likelihood of it being applicable to me.I now feel it isen,t.As far as i know it is the same if not linked to Parkinsons plus.The thread did not last long because it is common for people to avoid threads that can be more upsetting.This i think is understandable.However it is an important issue and should be highlighted especially as people like yourself,coming to terms with their loss,want to feel that something positive for others is left behind as i know your wife must have wanted.I know to you,this issue should be more important.It would be a relief to know that your Wifes UK brain bank donation was not in vain.
Thanks for highlighting,and best wishes
Titan

#6
A 'Google Alert' has just provided me with a link to a 'proof' copy of a chapter on MSA in a new book (March 2011) called Handbook of Atypical Parkinsonism. It is extremely comprehensive and is really aimed at the clinician and scientist. But if you are into that sort of thing and want to know as much as there is to know about MSA at this point in time, it is at http://www.neuro.it/documents/materiale%20didattico_Siena_2011/BERARDELLI_1.pdf. The details of the whole book are at http://www.cambridge.org/aus/catalogue/catalogue.asp?isbn=9780521111973.

#7
droflet

Firstly my sympathy on your loss.

What a selfless thing to do, donating your brain for further research to help others.

Your wife was certainly an admirable lady.

Hope you find some comfort in her selflesness.

#8
Hi -
Late in on this discussion, but if you haven't discovered more about this since June, there's a Wikipedia entry -
http://en.wikipedia.org/wiki/Multiple_system_atrophy
which has a list of MSA sites at the bottom of it, including the MSA Trust founded by Sarah Matheson
http://www.msatrust.org.uk/

Lee