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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MG crisis or sleep apnea?

MG_Kat33
MG_Kat33

Hi there. I was diagnosed in March and was on prednisone-only treatment until just two days ago when I started azathioprine.


I felt great for about 3 weeks after first starting steroids,  but since then have really kind of felt like I'm slowly getting worse and worse.


So my main question: recently I've noticed my tongue is too large for my mouth. I'm literally biting it all the time when I have my mouth closed. I've read this could be a sign of sleep apnea, but also a sign of the tongue being weak in bulbar MG. Before diagnosis I really only had ocular and arm weakness issues, so I'm worried that I am slipping into a crisis.


Currently lying in bed wondering if I should just continue resting, or go into the ER... I just learned about the breath counting test and so I don't have a baseline, but I've done it a couple of times and gotten to 37 & 45, but my voice gets hoarse and I find myself taking a sort of sighing deep breath every few minutes, which makes me think I might be low on Oxygen?


TIA!

Rhanson
Rhanson
With MG, when we think we might need to go to the ER, we should just do it rather than wait.
Russ
MG_Kat33
MG_Kat33
Thanks, Russ. Sadly, I am poor, stubborn and get anxiety symptoms, so I tend to avoid the ER/hospital as much as possible.
Rhanson
Rhanson
I was diagnosed with sleep apnea about the same time as I found out I had MG. I don't know if they were connected. I found that when I had breathing problems during the day from MG, if I sat down, relaxed, and put on my breathing machine (a System 1 Respironics CPAP) and my panic about breathing problems went away as the machine pushed air in and relaxed to let me breath out. I knew that was available if I had problems. I used it at night and it made it so I didn't need to take mestinon over night too. They are expensive, but there are hundreds available used at reasonable costs on ebay or craigslist.
Taking an extra mestinon pill can help too. My first hospitalization was really due to not taking enough mestinon which gave me breathing problems and then panic made it all worse. They upped my dose from 60mg 4 times a day to up to 8 "as needed." Eventually prednisone got my MG under control and I lost MG symptoms (to be taken over by prednisone side effects until I got down to the lowest effective dose for control).
Somehow we have to be able to relax when we notice breathing problems as, in my case, the panic that went with it made things much worse!
Try getting up and sleeping in a recliner for a while -- and watch TV at the same time to distract yourself. Read up on how folks with panic attacks try to overcome them -- for example https://www.getselfhelp.co.uk/panic.htm

However, with MG, we really don't want to "tough it out" as our judgment of how bad things are is not very accurate, as generally we are worse off than we think.
Good Luck
Russ