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[heysunshine]

Husband has been diagnosed with MSA in 2017. Previously diagnosed with Ataxia in 2016. Now I know he has had a cluster of early symptoms since about 2012-2013! He is now at the point of always using a walker, has no balance, has stiff muscles and tremors. He has slurred speech & low volume. Has lost all coordination... no writing & difficult to use a keyboard or to text. This has all rapidly progressed in 2.5 years! What should I expect next?

[Paul_and_Sue_Wood]

Hello Heysunshine

Firstly sorry to hear that your on this forum as none of us would rather be here but fit and well enjoying life to the full.

MSA is a condition that affects each sufferer differently both in symptoms and severity. None of us know what is next and all we can do is help and assist our loved ones in any way we can.

The big thing to watch for is infections and the nursing teams can help and advise you with that.

Contact MSA trust as they have specialist nurses to advise and educate you and professionals around you. Seek all the help you can and plan for every eventuality.

My wife symptoms started in 2009 and she need carers to do most things and equipment to move.

Join a local chat group depending on where you are to learn more from others.

Use this site to scream shout and ask for help.

Above all just accept and adapt.

Paul

[Hidden]

Hi Heysunshine. This is a degenerative condition so this will go down hill slowly with bouts in quick succession and everybody has their own journey to take. There is no standardset of degenerative steps that are taken. There are near equal male and females afflicted. Unfortunately it involves full body atomnic failure so everything that you take for granted will fail. Get a good team behind you as early as you can because you will need them. I live in the UK and my wifes condition came to our attention following a head injury in Nov 2013. Her symptoms were far worse than they should have been because she had underlying MSA. She is no longer seen by any Doctor's but the "Advanced nurse practitioner in the comunity" (old name, cronic condition nurse) she covers all medication issues. We do not use private domiciliary care, but NHS care at home team (accillary nurses). The sooner that people get to know your husbands needs the better they can help you care for him.

[chester2107]

hi sorry to hear as well - but welcome

my dad has msa and has deteriorated more in the last year as can’t really understand what he says , we went to

a support meeting a few months ago which was very helpful, lots of info and advice, unfortunately every person who has this condition is different, it doesn’t matter what age you are , and they can’t say how quickly it will get worse it’s worth

contacting the msa trust , they are all so lovely and helpful

sending you both love

elaine x

[Diane831]

Hi and welcome. This is a great place to share worries and give suggestions for others too. Have you got access to speech therapy for speech, communication aid advice and swallowing assessment. Your husbands onset sounds similar to my husband although we did get to the MSA diagnosis sooner than you have done we only had about 3 months of Ataxia before they changed it.

I think that I would be looking out for swallowing concerns, trying to be brave and be ready to accept other equipment as it becomes helpful and then do your best to enjoy the things that you can do at the moment.

As someone else said in our experience often something goes wrong - an infection perhaps - then things progress quickly, and then it plateaus again for a while.

Best wishes, Diane

[Fgsm]

Hi . My hysband is in exactly the same situation . Yesterday we had another consultation at queens square and the consultant said given the lenght of time since he has had symtoms he is doing well as most people are using a wheelchair by now . His suggestion was to keep active and see Neuro physio to stop the deterioration . I asked your question and he said every patient is different . We can only hope . Best wishes to everyone .

[Yanno]

Hello. The other posts have said most of what I would have said. I know you live in Canada but you can still use the resources of the MSA Trust here in the UK (msatrust.org) - they have a host of information on their web site and will respond to email questions form wherever. Also I think the Multiple System Atrophy Coalition operates in Canada and they also have information on their web site (multiplesystematrophy.org).

Please reply if there's anything else that this group may help with.

Take care, Ian