Short answer · Medically reviewed summary · Last updated: 2026-05-08
A diagnosis of Multiple Systems Atrophy (MSA) is life-altering, but you are not alone; focusing on symptom management, safety, and building a specialized care team is the most effective way to maintain your quality of life. Currently, there is no cure for Multiple Systems Atrophy, so treatment centers on mitigating symptoms like orthostatic hypotension and motor impairment to help you live as comfortably as possible. How can I build an effective medical care team for Multiple Systems Atrophy? Because Multiple Systems Atrophy is a complex neurodegenerative disorder, you need a multidisciplinary team.
5 people with Multiple Systems Atrophy have shared their first-person experience on this question at DiseaseMaps.
Which advice would you give to someone who has just been diagnosed with Multiple Systems Atrophy?
Advice for the newly diagnosed with Multiple Systems Atrophy, written by people who have lived it. What they wish they had known on day one.
A diagnosis of Multiple Systems Atrophy (MSA) is life-altering, but you are not alone; focusing on symptom management, safety, and building a specialized care team is the most effective way to maintain your quality of life. Currently, there is no cure for Multiple Systems Atrophy, so treatment centers on mitigating symptoms like orthostatic hypotension and motor impairment to help you live as comfortably as possible.
How can I build an effective medical care team for Multiple Systems Atrophy?
Because Multiple Systems Atrophy is a complex neurodegenerative disorder, you need a multidisciplinary team. Start by finding a neurologist who specializes in movement disorders or autonomic dysfunction. They should coordinate care with specialists in urology, cardiology, and physical therapy to address the diverse symptoms of Multiple Systems Atrophy.
How can I manage daily life and symptoms safely?
Managing the physical challenges of Multiple Systems Atrophy requires proactive safety measures to prevent falls and maintain independence for as long as possible:
- Fall Prevention: Use mobility aids and install grab bars in your home to counter balance issues and orthostatic hypotension.
- Hydration and Salt: Increase fluid and salt intake (if cleared by your doctor) to help manage blood pressure drops.
- Sleep Hygiene: Utilize a CPAP machine if you experience central sleep apnea or stridor to maintain oxygen levels.
- Energy Conservation: Prioritize daily tasks to manage the fatigue often associated with Multiple Systems Atrophy.
Why is joining a patient community important?
Connecting with the 911 members of the DiseaseMaps.org community living with Multiple Systems Atrophy provides invaluable peer support. Sharing lived experiences helps reduce the isolation often felt after a diagnosis of Multiple Systems Atrophy and provides practical tips for navigating disability benefits and daily logistics.
Next steps
- Consult a movement disorder specialist to create a personalized, symptomatic treatment plan.
- Join the DiseaseMaps.org community to connect with others sharing your journey.
- Review the NIH GARD website for the latest clinical trial opportunities and research updates.
- Discuss advance care planning with your family and physician while you are feeling well.
Medical disclaimer: This information is for educational purposes only and does not replace professional medical advice, diagnosis, or treatment.
References
- NIH Genetic and Rare Diseases Information Center (GARD): Multiple System Atrophy
- Orphanet: Multiple System Atrophy
- Defeat MSA Alliance: Patient Support and Research Resources
- DiseaseMaps.org: Community Data on Multiple Systems Atrophy
Posted Jul 9, 2017 by Mary 1000
Posted Jul 11, 2017 by Pam Bower 2952
Posted Jan 4, 2018 by Jan 1500
At the same time, this is a disease that can move rapidly. A lift chair and full electric bed can help you stand. Walkers and wheelchairs can help keep you safe and conserve your energy. Get familiar with what your insurance will cover. I found many helpful items on Amazon simply by looking at the items other people bought.
We used grab poles, a scooter, an electric wheelchair, a manual transfer device, and today a hoyer lift. All did the same thing, made the impossible possible.
Our neurologist gave us some wonderful advice. He said to decide then how we defined quality of life. For us, this meant no feeding tube, no pacemaker, no tracheotomy and no ventilator. We may change our minds, but that is because we do not believe anything is written in stone.
Posted Mar 23, 2018 by [email protected] 3020
Posted May 10, 2017 by Lorena 1000
