I have MSA. I was diagnosed earlier this month. I am currrently working out things to do to get support in place for me and my family. I think it’s early days - not very advanced yet. I am an engineer and musician, and there is so much I want to do.
i occasionally paint and write poems. I love taking photographs of the places around where I live. I have a wonderful wife, 2 young adult children, and 2 lovely cocker spaniels.
Hello MSA people. I am going to be here for a while.
Written by
fixedit
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You will find this forum helpful and supportive ask any question you may have no matter how dumb you think it is and you will get answers from all those who are on the same journey.
Do as much as you can for as long as you can whilst limiting risk as we find a trauma event usually causes the condition to get worse.
Thank you Paul and Sue. Diagnosis confirmed what I was already thinking, but there is so much to do now I have it. Most of my questions seem to be ‘how long until …’ but I don’t think there are answers to these. I have changed one kind of unknowing for another.
Good to hear from you and thank you for giving us such a vivid picture of who you are. Do remind yourself that, whatever happens, when it happens, you are still that person inside.
Everyone - me included - holds onto their date of MSA diagnosis, but of course it is arbitrary as we all had symptoms long before that. Mine was 2 years ago and the disease progresses slowly.
I am gradually having to cut down on some things (like work) to concentrate on finding ways of doing what matters (seeing friends and family - I too have two adult children - holidays with my partner, future proofing the house, reading, writing poetry, exercise etc.)
A few things I have learned from health professionals;
* Not everyone gets everything and everything doesn’t happen all at once
*These are the good years, don’t waste them
*Avoid falls etc - hospitalisation’s sets you back an almost irrevocable amount
From me:
* There’s usually a way round your latest limitation - you just haven’t found it yet
Hello Fixedit, Sorry to hear about your diagnosis. P or C?
I was diagnosed in 06/2022 & my world was rocked. It REMBD and swaying (balance).
Now gait, bladder & speech problems added. MSA-C, I have
Not a lot of physicians know about MSA. Best advice is find yourself a great support system and keep moving. Also sign-up for some forums like #MissionMSA or Defeat MSA
Mostly P but some C as well. It’s a mix of blood pressure, walking wobbliness and freezing, continence and retention, speech (a little slurring), swallowing (a very little), and dexterity (a little), and slowness everywhere. L-dopa is helping
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