What is MSA?
MSA is a rare sporadically occurring progressive neurological condition. Across all of the UK and Ireland we would expect there to be 3,300 people with MSA. It affects men and women almost equally from the age of 30 years onwards. The most common age for a person to be diagnosed with MSA is between the ages of 50 and 60 years old.
People who are diagnosed with Multiple System Atrophy (MSA) experience significant bladder and bowel issues often starting before other indications of MSA are apparent.
How is MSA Diagnosed?
There are no investigations or tests that can be done to diagnose MSA for certain, though some changes in MRI scan may be seen that support the diagnosis. Diagnosis is dependent on experienced movement disorder / neurologists recognising the key combination of symptoms in someone and recognising that they fit the MSA picture. Currently there is no treatment to slow or change the progression of MSA, so it is purely symptom management palliative care to maximise optimal quality of life.
What are the symptoms of MSA?
As suggested by the name MSA impacts on all bodily functions and movement. This is because a protein we all have and need for our central nervous system stops working properly and accumulates in three key areas of the brain, causing death of the brain cells in those areas. The three key areas are the movement control centres in the basal ganglia and cerebellum (The basal ganglia is the area affected by Parkinson’s Disease. The cerebellum area is the area affected by the ataxia conditions). As a result people with MSA have mobility, coordination and balance difficulties similar to people with Parkinson’s and Ataxia. The third area is the brain stem where the autonomic nervous system is centred. The autonomic nervous system keeps our body in its optimal state by monitoring and adjusting all our bodily functions without us needing to consciously manage these eg. temperature control, breathing, bladder and bowel function and blood pressure.
How does MSA affect the bladder?
Bladder and bowel issues for someone with MSA experiences are complex and debilitating. There are a number of nerve pathways from the brain and spine that coordinate effective healthy function of the bladder, bowel and sexual function. In MSA all these pathways can be impaired.
As mentioned these problems often begin before the mobility problems are really apparent, but impact on a person’s quality of life as the bladder and bowel function becomes so unpredictable and uncomfortable. People are anxious about going anywhere in case they can not access a bathroom or get caught short. As the condition progresses and mobility is more problematic, needing to dash to the bathroom suddenly becomes impossible and the indignity of having toileting accidents increases the isolation of people with MSA as they become reluctant to leave their homes.
Initially the bladder issues may present as feeling the need to go to the toilet frequently and not being able to hold on long enough to get there, or once at the toilet can’t pass urine or only pass a small amount, so then need to go again in a short time. Over time these symptoms increase and it is common to find that the bladder never fully empties as it should, causing recurrent urine infections. Anyone with MSA should be assessed by a urology specialist. Many people will need some form of catheterisation to ensure the bladder empties properly, reduce erosion of the bladder lining and subsequent infections. Many people with MSA will initially manage intermittent self catheterisation, but may ultimately need an indwelling urethral catheter or supra-pubic catheter. Often people with MSA do better with supra-pubic catheters as dysfunction of the autonomic system can cause spasms in the bladder and ejection of the urethral catheter or increased infection which tends to be less problematic with a supra-pubic catheter.
How does MSA affect the bowel?
Alongside the bladder difficulties, people with MSA also experience bowel difficulties. Whilst anyone with reduced mobility will experience more sluggish bowel function, other symptoms of MSA impact on the bowel function. Difficulties with chewing and swallowing make eating a diet conducive to better bowel function difficult, and swallowing fluids can be problematic as the condition progresses. As all laxatives require a good fluid intake to work well, impaired fluid intake can reduce effectiveness of laxative medications. The autonomic system also controls the release of enzymes and additives into the bowel to assist their working, as well as controlling the speed the bowel moves along. This combination of difficulties most commonly results in chronic constipation; though a minority of people with MSA can have an overactive bowel causing very loose bowel movements.
A further complication due to the autonomic damage is the impact on the circular sphincter muscles through the bowel so these do not synchronise as they should causing reflux; slow gastric emptying; bloating; inability to clear the rectum; or sudden loose stool. Proper bowel movement assessment should be undertaken, to ensure there is not significant colon impaction and a rectal exam to see if stool is present, and whether hard or soft to determine most appropriate management.
Urine infections and constipation are the two most common reasons why someone with MSA may experience an unexpected deterioration in their overall MSA symptoms e.g. mobility, speech, swallow, fatigue.
Achieving good bladder and bowel management with someone who has MSA is crucial due to the overwhelming impact these problems can have on all other symptoms and on the person’s sense of well being and self-esteem.
MSA Awareness week
The week of 21 March 2022 is MSA Awareness week. Please get involved and support people with MSA as follows:
- Follow, like and share our posts on social media to help us spread the word (Find us on Twitter, Instagram and Facebook).
- Wear one of our fabulous enamel pin badges, wristbands or orange ribbons.
- Suggest us to companies and businesses for an end of financial year charitable donation.
- If you feel able, make your own one-off or regular donation to the Trust.
- Host a tea party, a quiz night, or even a karaoke contest in your local community.
- Or take up a week-long sponsored challenge – whether it’s running your first 5k; mastering your marathon; finishing War and Peace without skipping a bit; or completing a 10,000-piece jigsaw puzzle.
Further Information
The MSA Trust is the only UK and Ireland wide charity supporting people with MSA, offering telephone and email support from qualified health professionals. The nurses and health care specialists attend clinics for people with MSA alongside NHS colleagues and facilitate support group meetings both face to face and virtually with the wider MSA team.
The website www.msatrust.org.uk has a wealth of information and webinar resources for people with MSA and for carer and health professionals that are working with people with MSA. Registration to join the Trust is free and enables the MSA Trust to more effectively support anyone with MSA, their families, friends and care professionals.