Have you experienced losing your voice?
Have you or anyone you know with MG ever experienced losing their voice, also known as aphonia? I'm curious to hear about your experiences. Any stories would be appreciated!
I have. It gets very weak and raspy. I also used to sing in a band and now because I never know how my voice will be I no longer do that. It was part time work and mostly for fun but my voice just isn’t reliable. I have to say though I now really appreciate the days I have a strong voice and can carry a tune. 😀
It's wonderful that you can appreciate the days when your voice is strong and you can enjoy singing. Those moments must feel even more special now! Keep cherishing those good days! This serves as a good reminder for all of us with MG.
Jodi, Team Member
I'm now twelve years in to this journey and take Mestinon daily, with IVIG every three weeks. Voice issues began for me a few months ago when my voice would just start to become softer as the day progressed or did a lot of speaking. Now it starts out fairly soft and rapidly declines to a hoarse whisper by midday and barely audible by evening.
This disease had already impacted my social life with the physical limitations caused by extreme fatigue and now I'm unable to speak over crowd noise or loud music, so even a moderately busy restaurant can pose a challenge. I had to stop physical therapy because it would just exacerbate my fatigue and my neurologist believes that speech therapy would be no more successful.
our community understands how challenging and frustrating these changes can be💕. I’m sorry you’re not having to navigate and manage these new challenges with your voice. Please know we’re here for you, you’re not alone! Best wishes, Julie (team member)
