Definitely talk to your neuro. Weakness in the bulbar muscle group (i.e. the area encompassing the tongue, upper throat, etc.) is a common symptom with MG. Weakness in this area, besides being unpleasant, can make it hard to chew, swallow, and clear excretions. It is important to talk with your doctor because there is a risk that you might choke on food or liquid, aspirate fluids or particles into your lungs, or if the weakness progresses it can compromise your airway. Don't mean this to panic you, rather it is good to be aware of these potential complications.

-Willie

Hi Tara!
Yes - all those symptoms you describe - are all symptoms that I experience, when my MG symptoms are ramping up, from mild to moderate.
And this almost always happens to me?
When I overexert my MG body, in the summertime heat & humidity.

Very glad to see you are watching your symptoms, carefully!
Wish I had been so smart!
- Ross

Thank you both so much. It certainly is frustrating and I have been just trying to be a trooper and muddle through it but my instinct is to call the neuro too. I thought at first maybe it wasn't the MG, but thanks to the great advice here I will call.

I recommend making an appointment with an MG specialist at a teaching hospital. It could take a month or more to get in. Also, make an appointment with your regular neuro and perhaps start on immuno suppressants and possibly start IVIG treatments.

MG can change real quick and many on this forum (me included) can end up in the ER. I recommend check with your doctor and hopefully they start some aggressive treatment before that happens.

Swallowing is a sign you may need more than Mestinon.

Good luck,
Dan

Thanks Dan,
I am not taking mestinon yet, I did do a trial over a year ago but my symptoms were mild. Now that I have progressed it is something I am considering.
Thanks so much!

Another question...or two. Is it possible for your tongue to feel swollen?
Oh and can the size of your thymus gland change?
Just curious.
Thanks!

Yes, your thymus size can change. Many people get repeat imaging of the thymus periodically to watch for changes such as size of the gland, a nodule or growth, or any other abnormalities.
It is also possible for your tongue to feel swollen. Many patients describe the same type of symptom with regard to the function of their tongue. I get what I call a "sticky" throat where it feels like the walls of my throat are touching or sticking together. I keep some kind of fluid with me at all times but I also have to be very deliberate about my swallowing to avoid aspirating, as Willie mentioned. Please contact your neuro as others have recommended. If you are not on mestinon please ask for a prescription. It isn't a cure but it will definitely minimize your symptoms if they aren't too bad. If untreated, MG is progressive. Make sure your doctor has a plan to get you on some form of treatment (immune suppressant) which will actually treat the disease no the symptoms. Those medications are usually things like prednisone, cellcept, imuran, etc. Then there are much more expensive options like plasma pharesis and IVIG, but since you haven't been on the others I'm sure they will want you to try them first.

Good luck to you and please keep us posted on your progress.
Aloha,
Angie

I never thought about a "sticky throat" being a symptom of MG. I have had problems with this at night every so often. It usually triggers a coughing fit and is one reason why I keep water handy at my bedside table (in addition to needing it to take my Levothyroxine around 5am).

I never thought of it as a symptom either until my neuro said that other patients have described similar symptoms. I always thought that I was just thirsty all the time or had dry mouth.

Looking back over the last several years I now know that I was experiencing way more symptoms than I ever realized. They all make sense now but nobody could make heads or tails of the symptoms back then.

I'm just glad that I know now. It's a path of discovery for us snowflakes, unfortunately.

Aloha,
Angie

Thank you everyone so much. It's amazing to me how much faster I can get answers then going to the actual doctor who never seems to know or thinks Im crazy! lol
Anyhow, I have been watching my symptoms a lot lately and things have changed quite a bit. Im so glad I came back to this group, it helps so much not to feel alone. All you advice, suggestions and support means a lot. Family just doesn't get it.
I called for an appt yesterday, but got the voicemail. Calling back today, just busy at work. But will do it for sure.

So I just had a really bad choking episode at lunch, I'm so embarrassed! I do have a cough that I've been dealing with for almost 2 weeks that I think is just a "cough". Im not sure if it has anything to do with MG, but choking on watermelon was ridiculous.

Sorry had to vent, just embarrassed in front of my coworkers, at home is one thing, but here...ugh

When I was more symptomatic, I coughed a lot because I was aspirating small amounts of saliva or liquid every time I would swallow, even if I didn't realize it. And I have the sticky throat feeling too; I'm guessing because the muscles are slightly more relaxed than they should be, so my throat closes more and the sides touch. I also (less frequently) have had hoarseness as a symptom, it felt like the muscles required to make my vocal chords vibrate weren't working, or my lungs were too weak to force the air out hard enough to speak loudly. And I've had a feeling that my tongue was swollen, probably because the muscles were too relaxed and was making my tongue feel bigger, similar to when you get novacaine.

Are you taking any medication for MG, if you're not taking Mestinon? Mestinon would probably be good for you to have, even if you didn't use it all the time.

When I first started having bulbar symptoms, this was one of the biggest and scariest things I went through. I have had acid reflux for a very long time, but I was having a problem where it was aspirating into my lungs when I was sleeping. I would wake up and my lungs felt like they were on fire and I coudn't breathe well. It freaked me out. I went to the ER twice during a month for this issue, and they said it was asthma/anxiety/reflux. I didn't get my MG diagnoses until the following year.

Yes, Tara. I was having a swollen tongue feeling, too. Those are the exact words I used with my neurologist when my speech started slurring. It felt swollen, or as if my whole oral cavity was crammed full of thick peanut butter. I felt "slow".

When I was in the hospital with my worst symptoms, between mestinon doses, my tongue would feel like it was too big for my mouth. I figured it was because all my facial and mouth muscles that supported my tongue were not doing so.