-
Finding a New Neurologist Required Self-Advocacy
For months I’ve been trying to get a divorce from my neurologist. We have irreconcilable differences, aka an untenable doctor/patient relationship. It just wasn’t working out.
Initially, I wasn’t getting any results going through the VA’s Patient Advocate office. The Neurology Department sat on their hands doing nothing.
After waiting…and waiting…I decided to push hard to advocate for myself (something all LEMS patients must do). I sat down and wrote a two-and-a-half-page statement, offering full details regarding this doctor and my request. I printed it out, signed it, and went to the Advocate’s office. It’s easy to get lost and ignored by telephone calls and messages. When you show up with a hard copy and hand it to them, the playing field shifts.
After reading my statement, it was scanned into the VA system, and an official appeal was launched. An official appeal gets attention. It bumps the case to the executive level! I filed my Statement and appeal on Thursday. The next Monday the Neurology Department was on the phone with me, setting up my Community Care referral for a new neurologist.
Do you have an example of your advocacy for yourself?
-
2 Replies
-
I started having symptoms in April 2019. At the time I had no idea why I couldn’t walk without having palpitations and why I couldn’t stand up. I started seeing doctor after doctor to figure out what was wrong. I keep getting the same answer – all tests were normal. I kept insisting it was NOT normal that I couldn’t walk. My primary doctor did some research and thought I might have POTS. I called a specialist and got an appointment for December. December of 2020! That was a wait of 15 months! I appealed to my primary doctor, who made the call herself and arranged an appointment for January 2020. I had a LEMS diagnosis by February 2020 and started medication a few weeks after that. The most important lesson I learned throughout this experience was that you must advocate for yourself. No one cares about the solution to your problems more than you do. The old saying “The squeaky wheel gets the grease.” is really true.
-
Anngail, what a great story! Everyone should read this. Way to go, staying on it and not settling. We truly are our own best advocate!
-
Log in to reply.