Hello - allow me to introduce myself. I've been on Daily Strength for about a year in the myasthenia gravis support group. I have a very mild case of myasthenia gravis which only affects my eyes so far. Because I've had it for a year without additional symptoms, statistically my chances of it spreading beyond that go from about 80% to about 30%, so I'm happy about that.

Recently I've had a relapse where it's affected my eyes, but I've started to get much better and my eyes are quickly coming back to normal. I was very happy about that.

However a few days ago, I had some saliva in my mouth which I cleared out with my tongue and had a little trouble. I think I started thinking "oh no, maybe my tongue is affected as well" and the next thing you know, my tongue is super-tense and hard to maneuver because it feels like a big hard plank from the tension. I went on to brush my teeth and found it difficult because when I'd rinse out, the water would run under my tongue! I tried to talk and found myself lisping.

I freaked out about this, but went to bed. I called my myasthenia doctor's office and they told me that that sounded nothing like an MG symptom (and I agree - with myasthenia the tongue gets weak, not tense) but to go to the emergency room. This is pretty standard because swollen tongues are a symptom of an acute allergic reaction, so I complied.

When I got there, the triage nurse asked me if I was on a blood pressure medication and in fact I am; I guess certain ones cause tongue swelling, and they just switch you to another one and it goes away. I actually was asked about blood pressure medications I think three times, so it seems like something they watch out for.

After two days in the hospital and being seen by lots of doctors, they agree that it was not an MG symptom, and I'm about 90% certain of that (that little 10% is the doubt I'm sure we all know, but I know it's pretty irrational). Mostly they said it was this swelling that accompanies the blood pressure medication.

But I found that it gets triggered by me worrying about it! I could be talking to someone else about something unrelated, and I'm fine. As soon as I start worrying about it, there goes my tongue, and it usually stays that way until I distract myself with something else (and just continuing to talk about other things really isn't enough of a distraction).

So I'm pretty sure this is an anxiety symptom. and I communicated this to the doctors and some of them agreed that that could be a factor in it's recurrence.

I've had "phantom symptoms" like this before but never this bad. For instance, sometimes I feel that my legs are fatigued, but I keep walking and end up thinking of other things and a few minutes later, what do you know, they're not fatigued and I was just tensing my legs thinking that they were fatigued. I laugh it off and think to myself "I forgot to be tense".

However, this one is much more difficult to deal with. It's not as easy to distract myself when I'm in a conversation with someone, and it's very difficult to do things like eat. I've only been eating soft foods as a result, but I know I can't do this forever. I know in my head, and have even observed, what triggers this, and that it's just due to my fear, but once it happens it happens and I'm stuck waiting it out for it to go away. This is obviously an impairment.

I've had panic attacks and insomnia before...mainly I dealt with those by stopping my worry about them. For panic attacks, it was more like "well, I've been through those before, if I get another one I'll just keep trying to do what I was doing and distract myself". For insomnia, I just thought "well, there's nothing you can do to force yourself to sleep, you just let yourself fall asleep, so the less you think about whether or not it's going to happen, the better". But I'm struggling to come up with a strategy for this one.