I finally was diagnosed with MG after several weeks of intense symptoms & meeting with several doctors. Mestinon 60mg (which I started one day prior to actually being diagnosed at 30mg dosage) seems to take the edge off the symptoms.

The most concerning symptom presently is the sensation of having my throat close. I can feel a lot of phlegm in my throat (slightly lessened, I believe, from mestinon). The throat-closing sensation began when I was lying on my back. It gradually began happening when lying on my right side, then my left side, now it even happens when I'm sitting up to try & sleep. The throat-close sensation is accompanied by a popping sound when I swallow. The popping can be felt as a vibration if placing fingers against my throat. Because of severe tooth grinding that began these last couple months, I've loosened or broken off several crowns & a couple teeth. Ongoing use of a mouth guard at night keeps my jaw weakened & aggravates this problem (that's my theory), although I'm hesitant to stop using the mouthguard due to the loose teeth & crowns.

I've visited the E.R. about the throat closing sensation, ball of mucus in throat & popping sound, but they sent me home having looked at my throat using a tongue depressor & not finding a problem (E.R. visits have twice sent me home -- the first time following several incidences of fluid/saliva aspiration, the second time due to the symptoms I'm describing. They'd assumed I was a hypochondriac when I discussed my concerns about MG & resultantly dismissed the symptoms. (I got the MG diagnosis after the two E.R. visits).

Anyway, my questions.... What should I be doing about this? My existing neuro (who diagnosed the MG) said to take mestinon before sleeping. I don't feel completely comfortable leaving it at that since she's not completely familiar with MG, and the mestinon affect isn't likely to last all night. Is there a type of specialist I should see? Is this symptom overly concerning or par for the course? Is it okay for me to sleep lying down, even if these symptoms hit en masse? I'm getting pretty tired because I've been trying to sleep sitting up until I get some answers. Any ideas or suggestions? Should I just not worry about it? Has anyone else experienced this? What did you do? Thanks!

Hi seishin. I have been experincing the throat closing sensation you describe, lying down, sitting up, whatever position it seems. As I was waking up gasping for breath lying flat, I have now been sleeping at a 30 degree angle for about five weeks, which seems to lessen, but not completely get rid of the problem. I would say it took me a while to adjust to this new position and I bought a new V neck pillow, which I use with another five pillows to support my back correctly.
As I don't have a diagnosis I can't advise you on what to do MG-wise but all I can find is to try and relax as much as possible when it is happening, usually mine passes the really bad stage within 10-15 minutes.

I have the exact same sensation.. and it can be awful!!! At times it is so bad I sound like a frog when I talk!
Several months ago, i got a cough/cold which threw me into a bad bad exacerbation, along with barely being able to put one foot in front of the other, this throat sensation was terrible.. i felt like the back of my throat was touching the "front" of it.. When I opened my mouth to look, my soft soft palate did elevate like it should, so it was strange!! I could barely swallow - I was choking on liquids and solids, so stupidly just didn't eat/drink much for a few days till my IVIG (stupid I know)! I even tried to talk a few times, but no sound would come out, as it felt like my throat was closed.. after that next IVIG it was almost back to "normal", and just waxes and wanes since then

Have you had a sleep study? If you feel like your gagging/choking etc at night, they can do a sleep study and possibly put you on bipap/cpap or just add additional meds/ivig etc to help you a little more? (fyi- I don't have a firm diagnosis .. but they have seronegative MG high on the list)

When I lay on my back it feels like my throat is closing so I sleep on my right side. I take Mestinon at least an hour before bedtime because I produce too much saliva with this med and if I take this med just before bedtime I will wake up coughing - feeling like I'm drowning in saliva. That's also why I don't wake up in the middle of the night to take Mestinon. I also grind my teeth so bad that I've broken almost all my back teeth. All my front teeth are still in great shape. However the Mestinon is helping me with the grinding. I think I was grinding because there wasn't enough saliva in my mouth to begin with. A Neurologist told me it was Bruxism. My Trigeminal Neuralgia usually comes when my mouth is dry too.

I haven't done a sleep study, but it's been proposed to me. I'd only feel secure doing the sleep study sitting up to sleep, or if I feel confident the study handlers are extremely familiar with how to handle myasthenia-related sleep issues.

With these sensations happening, can anyone tell me what, if anything, I should be doing? Should I go to the E.R. again? My newly-regular neuro said to go ahead & sleep upright if I want, she had no idea if lying down would present a problem. She didn't suggest seeing any specialist or getting this evaluated in any way. I've independently scheduled to see an Ear Nose & Throat doctor, but the appointment's not until next week. Should I attempt again to get faster care through a visit to the E.R.? any ideas or suggestons? Is this dangerous?

The ER can't help you. The are there for emergencies, not chronic conditions. When they see you, they are thinking, what do I need to do to save this person's life today, stop the bleeding, heart attack, set the broken bone, etc. This is an ongoing problem you've already been to the ER for. They are not going to fix it.

I get this same exact thing and have had it since before I got diagnosed with MG. It is very unsettling. I take Mestinon right before bed. If you are super concerned, set your alarm and get up and take another dose at a scheduled time. That's the best you can do. I would feel my throat literally lift up/ open up when the Mestinon kicked in.

I also found sleeping on my side made it a LOT better. Those two things usually did the trick. Other than that, I developed a bad snore.

Yep, I get this too! Not all the time though, I get this when I'm in a Myasthenia episode/bad week. It happens to me when I drink mostly (especially cold/cooler drinks), so I learned to not chug anything anymore.

I tried explaining the sensation to my mom, it's difficult to explain. I explained it more like an air bubble (especially for me because it happens when drinking). It's like as I am drinking an air bubble is trying to come up, but gets stuck, but if I press my fingers against my throat in that area, it pops!


Maybe it's not the same thing, but this is what I get with my throat.

Thanks yall!!
I haven't had the sensation in a while thank goodness, it is so unnerving!!

Maiden- Mine pops as well - I have crepitus around the thyroid.. it is so strange! when my first symptoms started it felt like it would pop when I swallowed.. i sore my issues were thyroid, but it's been tested so many time and always normal!

I would say mine is *just* below that..almost where your neck and chest meet.


I know EXACTLY what you mean. I am going through the same thing, especially because my mom has Thyroid problems and is diabetic. I tell her ALL my symptoms and she says, "yep, you sounded like me!" and she had her symptoms for 10 years before her thyroid tests finally showed. We are now doing our best to try and stay on top of it so I don't suffer 10 years, but mall my tests are normal. The thyroid is such a funny thing, all the problems it can cause..some of it being so similar to myasthenia also.

I still won't be surprised if one day my thyroid finally shows itself on a blood test. In fact, I'm almost counting that it will, it's just a matter of when.

Have you tried Mestinon Timespan 180? It is usually taken at night just before you go to bed. It is a slow release mestinon and definitely helps me at night. If you feel like you have mucus in your throat, it may be because your swallowing muscles are too weak to get the mucus down. I tend to have this problem when my allergies are bad and I have been coughing a lot. I can't seem to get the mucus up or down and it can be a pretty serious problem. I do go to a pulmunologist and he prescribed me an at-home nebulizer with muco-mist to break up the mucous and it really helps.

I also use a c-pap and if I don't have it for some reason, I sleep in a recliner.

Hope you get this problem worked out! I can be a hassle.