Do you have problems swallowing?
Myasthenia gravis causes weakness of the swallowing muscles of many individuals, leading to problems involving choking, a terrifying experience, https://myasthenia-gravis.com/living/swallowing-speaking-symptoms, https://myasthenia-gravis.com/diet, and https://myasthenia-gravis.com/living/barium-swallow-experience.
Have you had problems swallowing before? What foods are tolerable? How do you manage to take any prescription pills?
Diagnosed September 24, and swallowing has gotta worst and worst. Today was the first day I could not swallow my meds, just won’t go down and then I start choking and spit them out. I am currently having more issues with liquids than solids, to swallow liquid I need to put liquid in my mouth then lean all the way forward and swallow several times. To take my meds today I mashed them and took small bites of tapioca to get the meds down. Solid food I can do 2~3 bites then take a break and try more later. Today was day 2 of my first ivig infusion, my Dr is splitting my first infusion over 5 days. No improvement yet but am hopeful when the infusions are done I’ll be able to eat and drink again.
Hey there! I’m really sorry to hear that swallowing has become such a challenge for you. It’s good that you found a way to take your meds, even if it’s not ideal. Some medications have liquid versions instead of pills, although it seems liquids are just as difficult to manage. I hope the IVIG infusions start to make a difference for you soon. Here is an article and discussion with IVIG tips if you are interested: https://myasthenia-gravis.com/living/ivig-lessons-learned & https://myasthenia-gravis.com/forums/ivig-side-effects
Jodi, Team Memberthat was a very good summary on IVIG, I can definitely relate to the hydration issue relating to swallowing, it is hard to hydrate when swallowing is so difficult. The option of pre hydrating via IV seems like it could really help. I have been lucky there at least with 3 of 5 infusions done I have not had any significant infusion related side effects. Swallowing is still challenging but I am having more success today so hopefully tomorrow is even better.
Yes
I'm really sorry to hear that you're dealing with swallowing issues. If you’re comfortable sharing, I’d love to hear more about your experiences with MG and how you’ve been coping. Are you on any treatments?
Jodi, Team Member
Yes
I'm genuinely sorry to learn that you are experiencing difficulties with swallowing. If you feel comfortable, I would love to hear more about your personal journey with MG and the various methods you've used to try and cope. Additionally, are you currently receiving any specific treatments that have been helpful for you?
Jodi, Team Member
Yes. It's especially bad in the mornings while trying to drink coffee.
mornings in general can be difficult as we’re still fatigued. Have you tried pushing back your drinking of coffee? Just until your body is a little bit more awake or if you have tried has this helped? ❄️ team member, Deborah ❄️ I'm awake a good hour, taking care of animals, before having my morning joe. Mornings in to about 1 pm, I seem to have problems with liquids. Thanks for the idea but had already thought of that. I hope your well and your MG is managed well.
