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Multiple System Atrophy

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Moys
Moys Community member Posts: 4 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
My husband was diagnosed in 2016 with MSA and has been living with this disease since.  I wonder if any other members have any experience of dealing with this condition.

 GP's do not seem to know much about the disease so help is very difficult.  Our local hospice and Wellbeing centre has been more helpful together the MSA Trust. 
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  • dolfrog
    dolfrog Community member Posts: 441 Pioneering
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    From Defeat MSA Alliance
    https://defeatmsa.org/?gclid=EAIaIQobChMItJCGiJLN6QIVm-vtCh28AAohEAAYAiAAEgJup_D_BwE 

    WHAT IS MULTIPLE SYSTEM ATROPHY ?

    MSA is a rare, rapidly progressing neurodegenerative disorder that affects the brain. MSA impairs the systems that regulate blood pressure, heart rate and the bladder – many of the basic bodily functions that people take for granted every day. People with MSA suffer from dangerously low blood pressure, speech and swallowing difficulties, sleep disturbances, breathing problems, rigidity and tremors. The life expectancy for those with MSA is typically 5 to 10 years. There is no remission of the disease. Almost 80% of patients are disabled within five years of the onset of the motor symptoms, and less than 20% of the cases survive beyond 10 years. Rate of progression and the speed of decline may vary widely from case to case. Patients with advanced MSA often become bed-bound, unable to speak and immobile. At present, there is no cure for MSA, no genetic tests to detect it, no therapy to slow it and very few treatments to manage its debilitating effects. Currently, diagnosis is clinical in nature with no certainty until an autopsy is performed or posthumous pathology examination. Learn More About MSA from the Mayo Clinic.

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  • Stressybabs
    Stressybabs Community member Posts: 1 Listener
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    Hi Moys I realise it’s been a while since your post, I’ve only just joined the forum. My Father had MSA (18 years since diagnosis), I have never met or spoken to anyone with this devastating condition. Like you said most doctors do not know much about it as it is so rare. I worked in theatres and an anaesthetist told me she had read about it but never met anyone who had it also. The information that I found was mainly American and the condition there is called Shy-Dragen syndrome. You may already know all this, I’m sorry if I’m repeating what you know. It’s just I found it so hard and still do trying to explain my dads condition. More research definitely  needs to be done but I fear as it is so rare this will not happen. I just wanted you to know there are people out there who have experienced this, but not many. Happy to chat 
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  • Moys
    Moys Community member Posts: 4 Listener
    edited June 2021
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    Hi @Stressybabs Thankyou for your message.  I am sorry to hear about your father I know only to well how you must be feeling. Yes I totally understand where you are coming from.  I lost my husband Mick in July last year and the last few years have been a total nightmare not just for me and my husband but for all the family.  We are still trying to come to terms with the whole episode. I did find consultants and GPs unhelpful. The only time we had a breakthrough and more help was from our local hospice, they were brilliant and it helped so much liaising with people who knew what Mick needed to guide him through this awful illness. People suffering from MSA are the forgotten patients, it seems as they were saying you need to just get on with it.  It seems to be a bit of a lottery how you are treated.  I hope they can find a way forward to help people with this illness but I really doubt this very much. I agree that most of the information does come from America.  My husband was on simvastatin for many years and I am almost convinced this caused him to develop the disease. Also happy to chat. Take care.
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