Anyone similar age: I was diagnosed... - Multiple System A...

Multiple System Atrophy Trust

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Anyone similar age

Lewiskendall profile image
4 Replies

I was diagnosed with msa-c end of January last year aged 43. Took a couple of years to find out my issues I was having but I was wondering if anyone on here who are at a similar age as most people seem to be older. Om on medication for back pain relief. I've changed my car to a automatic which helps. I currently still work 3 days per week but am finding it very hard. I'm the only wage earner and really scared if I have to stop work financially.

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Lewiskendall profile image
Lewiskendall
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4 Replies
Derkie54 profile image
Derkie54

Hello,

Welcome to the forum.

My wife was diagnosed at 62 in 2016 but I could see changes at least 25 before that so she could have had it around your age. I think MSA was not widely recognised at that time.

Her changes have been slow and didn't really stop her for many years. Hopefully this will be the case for you, symptoms vary a lot between patients.

Have a look at the MSA trust, lots of info and helpful staff.

msatrust.org.uk/

Take care

Derek

Kaye31 profile image
Kaye31

hi, so sorry it is a horrible situation. My husband was diagnosed at 50, now 53. At 50 he was running and incredible fit. He is now wheelchair boy d and hoisted. He can also no longer speak

It has been incredible fast for us xx

Frenchoak profile image
Frenchoak

Hi, I was diagnosed with MSA-C in Nov 2022, I'm now 60.....but just recently I've been told by another Neurologist that it's not MSA-C , but Late Onset Ataxia, so far of unknown cause....I don't feel any differently from the first diagnosis though, just even more confused by it all! Good for you changing your car to automatic , I sold my manual car and stopped driving, now with much regret as I'm reliant on others for lifts! The MSA Trust has been an invaluable resource to help me manage and full of great info & people . please speak with Sam Fitzgerald at the msa trust, she'll help you through a benefits check; there's a Benefit available called ESA, Employment Support Allowance, if you're under 65 and not able to work anymore . I hope this info might alleviate your stress at least a little (stress no good for MSA sufferers!). This forum is a wonderful font of knowledge , Stay tuned!!! Best wishes 😄

esj20 profile image
esj20

Sorry to hear this and sorry that you’re actually on here but glad you’ve found this page!

I’m 53 and have recently had to stop working.

Contact the MSA trust for financial advice which I found invaluable. I worked for my self as a consultant quantity surveyor so have been left with not a lot of financial backup and, cannot access my pensions.

I feel for you mate, your not alone

Yours

Alec

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