Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Swallowing Difficulty

Amie
Amie

Hello to all. I have recently been diagnosed with musk MG. I am on Mestinon and had been on Predsisone with an increasing dose every 2 weeks (I'm only on week 2 at 15mg). The first few days I could still swallow and take a few sips of tea or orange drink, by week 2, swallowing was worst. I am on G-tube feeding for weight restoration as I progressively lost weight from the dysphagia. My speech is also affected, worst than it was since prednisone. Does it get worse before getting any better? Has anyone been on Plasmapharesis? Please help me as I am so lost and confused. Thank you for any comments.

Rhanson
Rhanson
Sorry to hear you have Musk MG. Most of us have a difficult start with MG until treatment works (and the right treatment if figured out). In my case it was nearly 6 months with mestinon (about 6=10 pills a day) and 60 mg prednisone.

Some folks with Musk, according to the internet site require more aggressive treatment than ACHR plus MG. Most of us with MG do get better, but the first year is difficult.
Be persistent with your doctors, read all you can about MG so you know what is happening, ask questions to your doctor, and expect that you will improve with time.
Most of us get our lives back.
Good Luck
Amanda2016
Amanda2016
Sorry you're struggling right now Amie. For me, my flareups would get really bad before they got better. This was in the beginning. I was diagnosed over 9 years ago and I've gone as long as 10 months with no flareup at all. I think once you establish a treatment plan that works, it will get easier. At first, when I would experiment with different meds, my flareups would get very bad...scary bad. For me, prednisone usually does trick. When it doesn't, I take mestinon. I hope it gets better for you. I trust that it will.
robt111
robt111
When I first came down with MG, I had difficulty swallowing. I was put on Mestinon at first which helped with eyelid drooping and slurring speech. I lost weight. I took several weeks on 20mg prednisone before my swallowing problem went away.
tmack
tmack
I was diagnosed with MG in April of this year but I can now see I had symptoms a year ago. I am on Mestinon and Cell Cept plus I get a IVIG once a week. The cell cept dose was just doubled. The goal is for the cell cept to kick in and we can taper off the IVIG. My swallowing has improved. I still use a Peg Tube for feeding but I am able to swallow many foos now.
The weakness is the most trying issue; a simple chore like taking out the trash can deplete my energy. I'm told that the Docs must keep experimenting with med doses until things began to work.
Good luck to you; hang in there. I am most encouraged by people like Amanda2016 who have had MG for years and who are now leading normal lives.