By Cathy Chapman
During the course of my journey with MSA, (I was diagnosed in 2012), going to the Emergency Room and having to stay overnight in the hospital was something I have had to experience multiple times. I want to share some tips that have been very helpful to me in navigating a positive outcome when you need to go to the hospital and have to deal with doctors and nurses who are unfamiliar with you and your case, and possibly MSA in general.
- Give the doctors a printed out copy of “What Is MSA” https://www.multiplesystematrophy.org/wp-content/uploads/2023/04/MSA_2023_Trifold-WhatIsMSA_ENG.pdf Not all doctors are familiar with many of the specifics of MSA, so if they are not, this will help them to familiarize themselves with the disease and provide you with better care.
- Give the doctors a list of medications, supplements and if you are participating in a clinical trial, the information for the trial.
- Let the doctor know what your current MSA symptoms are.
- Provide them with the names and phone numbers of your neurologist and all of the other doctors on your care team. The ER doctors have in the past contacted my neurologist and with the most recent visit, my pulmonologist for consult. This was very helpful for them to know the best way to proceed with treatment.
Another good resource for when you go into the hospital is this guide from the MSA Trust. While they are a UK-based organization, the document still provides helpful information that may pertain to you, even if you are in another country.
I leave you with a quote:
Hope is like a road in the country;
There was never a road, but when
many people walk on it,
the road comes into existence.