How do you manage MG speech problems?
Have you ever experienced speech problems with MG? Speech symptoms can include slurred speech, trouble forming words, a monotone voice, and more.
Tell us what it's like. How do you cope and have you found any treatments or strategies to help?
take a steady strong breath and continue speaking if possible. Otherwise just stop talking.
I have to stop and focus, and talk slowly and be patient to say what I want to say.
I have to stop and focus, and talk slowly and be patient to say what I want to say.
I was diagnosed with MG early 2022 and started with bulbar symptoms (slurring, choking, head dropping) and collapsing for no apparent reason in 2021. Even knowing what's going on, even with treatments that have helped (a bit), I still run into problems when I start slurring and stumbling - people just assume I'm intoxicated and rare pretty rude. In the moment I don't always realize why I'm being treated badly - unless I start stammering I don't know I've been mumbling. I have a wallet card about MG but the font is tiny. By the time someone has decided that I'm drunk and therefore being disruptive, they aren't necessarily willing to squint at my wallet card. At the times when I'm struggling with speech, I generally am also experiencing some of the fun "constellation of neurological symptoms" that is part of MG: not fatigue but feeling like I'm inside a kaleidoscope that someone is spinning. Frequently unable to put words together at all.
After a recent and very upsetting experience of this, I made up my own version of the wallet card, but in 11 pt Comic Sans (looks friendly) and have stashed some in my handbag. I haven't deployed it yet, but at least I created a self advocacy tool when feeling ok and now have it to use when I don't.
Welcome to our community! We are thrilled to have you join us 😀 I'm sorry to hear about your struggles with MG. We understand how incredibly frustrating it is to have your symptoms misunderstood and feel mistreated by others. We admire how you proactively approached a problematic situation by creating your own version of a wallet card. It's great that you have a self-advocacy tool to use when you need it. Having something like that on hand can provide a sense of security and empowerment. When the situation arises that you need to use it, I hope it serves its purpose well. Here are three articles that I think you may relate to: https://myasthenia-gravis.com/living/choosing-compassion, https://myasthenia-gravis.com/living/avoid-saying, and https://myasthenia-gravis.com/living/speech-struggle-experience.
Jodi, Team Member
