What. Are the stages of Msa?

[Dchovan]

What are the stages of MSA? How fast has it progressed for you.?

[Yanno]

Hello. If you look at some of the previous posts to this community you will find many comments about people with MSA all being on a journey but with different routes and stages. For many their diagnosis, due to the rarity of the condition, comes quite some time after symptoms first showed themselves. Even within our small support group in Worcestershire/Herefordshire/Gloucestershire (UK) no one has exactly the same journey. Jackie had an early diagnosis but was still initially incorrectly dx’d as having had a stroke.

How are things with you? I see you are in the USA, do you have support networks there? In the UK the MSA Trust is a significant source of information and help. There is much information on the MSA web site in particular here: msatrust.org.uk/what-is-msa...

Take care, Ian

[FredaE]

Hi

What Yanno says is quite right. There is no real answer to either of your questions.

Have you got a possible or a probable diagnosis? No one has a definite unless they have their brain looked at post mortem.

This is one of the hard things about MSA - the uncertainty - as far as symptoms and progression is concerned there is no clear answer or time scale. As we say, everyone is different. Not only that, it sometimes takes quite a time to get a diagnosis of any sort. People are often diagnosed with other neurodegenerative disease first, sometimes the diagnosis is changed several times before it comes to rest on one diease or another

If you look on the website of the Multiple System Atrophy Trust based in London you will be able to access first class information about all aspects of the disease which may help a bit with the answers to your questions.

Beware of oddballs and cranks trying to sell you "Cures". At present there are none although it is usually possible to deal with a some of the symptoms at leasy for a time

Good luck

FredaE

[Ceegac]

Hi, I’ve been lurking in here for a while as my Dad was diagnosed with MSA 2 years ago. Up till this point his walking has been stable - slowing down and wide gait but still able to walk around freely without any help. However there have recently been some instances of his legs just totally seizing up and unable to move so he has to get to a seat quickly. Just wondering if the losing ability to walk is most often a gradual thing going to sticks / walking frame of some sort or with MSA is it more a sudden jump to wheelchair as legs just ‘stop working’?

I appreciate it may be different for everyone but be keen to hear any thoughts.

Thanks!

[Valsdaughter in reply to Ceegac]

Hello my mum was diagnosed in July 2014 and has until recently been able to stay mobile all be it very slowly and stopping for lots of breaks with a stick and then a walking frame with wheels but in the last three months she is struggling to move around the house without clinging on to furniture for dear life. Her deterioration seems to come in waves and then she Remains the same for a few months/weeks.

[Yanno in reply to Ceegac]

As has been said so often, there’s no ‘normal’ just a list of things that seem to happen or can happen in no particular order. Jackie’s balance was poor from the very start - before diagnosis even. Because of that walking has been very very difficult. Whilst the legs work, with no balance, to walk even a few paces quickly became more and more difficult.

There’s always a silver lining however, since having a few nasty falls very early on, because Jax doesn’t walk without help or a wheelchair, near misses have happened but no falls. Talking to others, it’s a fall that seems to set a sufferer back so much.

We now see Jackie not as wheelchair bound but wheelchair liberated because it enables us to do so many things that would be impossible without the chair.