I am so very sorry about your mother. Even with MRI, MSA is often confused with similar conditions like Parkinson’s or Huntington’s (with both false positives and false negatives for MSA). If it is MSA, it is incurable and progressive, but the life span can vary widely - up to 23 years - and quality of life can be drastically improved through speech therapy, lots of hydration, massages, etc.
There is a member of the The International Parkinson and Movement Disorder Society in Kuala Lumpur - Dr Nor Amelia Mohd Fauzi. She co-founded the Neurology research lab at UITM. Her email is [email protected] and her Twitter handle is @Amelia_Fauzi. I don’t know how responsive she is, but you could try asking her for general advice.
Thank you so much for the information and the good grace anon. I really appreciate it.
Fortunately we got a good, patient doctor who prepared all of us for the possibility of my mom having MSA even tho we still have to wait for MRI scanning for official diagnosis (govt-insured healthcare has a long waitlist🥲) but yeah... The biggest suspect is MSA. All the symptoms are there.
It's a really really tough pill to swallow. She still struggles with the loss of my dad and to have this rapidly worsening condition on top of it is awful.
Wish me luck, wish my mom luck specifically, so that she can be as comfortable and as safe as much as she needed. I hope everybody whose struggling with health condition rn can be healed, or feel comfortable and safe with your loved ones.
it sucks really hard to be in condition we cannot control but we all deserve fulfilled lives despite it all 🙏