Multiple System Atrophy Patient Panel March 2023

The MSA journey presents problems that most have not encountered before. Oftentimes other MSA patients have encountered similar problems or concerns. During this panel, MSA patients Gary Troutman, Alan Smally, and Julio Santana share some of their experiences and answer questions from attendees.
THIS EDUCATIONAL SESSION IS NOT INTENDED FOR THE PURPOSE OF PROVIDING MEDICAL ADVICE. All information, content, and material is for informational purposes only and are not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. The information supplied through webinars or on our webpage, or by any representative or agent of the MSA Coalition, whether by telephone, email, letter, or other form of communication, is for informational purposes only and does not constitute medical, legal or other professional advice.

[@joannalalicata1281]

What study was Alan in where he believed the medicine was helping and WHAT WAS THE MEDICINE? People focus on the most important points PLEASE! How do scientists take a patient off a life saving drug! Unbelievable!

[@brendadickenson3547]

Very informative, thank you

[@kathrynaldrich5441]

Could someone please explain the MSA diagnosis process? I was diagnosed with Parkinson's in 2021 but suspect that it's really MSA. I have an appointment with my neurologist in 2 weeks to discuss my concerns. What should I be asking for in terms of imaging or tests?

[@markgluchman8180]

What is the phone and/or email for MSA GUIDE and MSA HELPLINE please?

[@agent4you2]

I was recently diagnosed with MSA - took two years to figure out.

[@C-Dub-K]

Be well 👊

[@dseign2696]

My symptoms I have been issues with bladder not completely emptying, optic nerves, balance/gate, frozen shoulders and stiff neck, drops in BP and blacking out. I was just Dx with POTS and Autonomic Dysfunction. My question is, how do they figure out if this is a simple Dysontomia issue or something more serious like autonomic failure or MSA?

[@C-Dub-K]

Add Parkinsonism or cerebellar signs with the dysautonomia you’re experiencing and boom

[@Markyourwelcome]

Have msa to feel depressed and I feel like a burden to my friends and family

[@dseign2696]

@@Markyourwelcome My close friend told me, by me not asking for help, that I am robbing her of her blessings. I hope this helps you. It is hard being on the receiving end. Maybe keep this in mind.

[@Markyourwelcome]

My mom had it also and no one knew what it was that was the in the 9os and they still haven't got a clue do your doctor know if they are any closer to understanding if

[@baserkaratas]

can you use turkish subtitles