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...
When I first started taking prednisone last year, I noticed that I had a "scalloped" tongue, where you could see that it was pushing up against the teeth in my mouth by the marks on the side. It may just have been because I was examining my tongue for a yeast infection, which I had heard is a side-effect of prednisone, that I even looked at noticed.
Well, a few days after I start a higher dose of prednisone (going from 50mg every other day to 50 mg a day to treat my relapse), I start lisping and it feels every now and then like my tongue is too big for my mouth, sometimes I have trouble digging it down into that space in back of my teeth, but it goes away quickly when I get less stressed.
I talked to the nurse at the MG clinic and she says that this is not the typical MG tongue symptom, and I agree - the tongue actually feels too strong, not weak, and it doesn't get worse just by using it more. They tell me to go to the emergency room, though, which is pretty much the standard advice for a swollen tongue because you might be having an allergic reaction.
So I do that. The first question the triage nurse asks is if I'm on blood pressure medication, and indeed I am on lisinopril, which is known to cause angioedema which can manifest itself as a swollen tongue. I actually get asked this question a few times and find out that it's not an unusual thing to have happen, and it can happen any time you are taking it, even years later. They just switch you to another medicine to treat your blood pressure (and I didn't even have high blood pressure; they were using it to treat cardiomyopathy which later resolved and they usually just maintain you on it for a few years). After that, it goes away on its own.
But...they want me to stay at the hospital and observe. I talk to five other neurologists/students and they all pretty much agree that this is not how MG manifests itself in the tongue, I was pretty chatty with a group of them for like a half-hour and let them do all sorts of those "push against my hand"-type tests, happy to do it if just for the company, and my tongue doesn't get weaker or anything.
I also start to notice that it goes away when I'm less stressed. I take a shower the first night thinking it would relax me and get my mind off of it and sure enough it's pretty good after that for the night. But when I started eating and worrying about it working right, it gets super-tense again and starts sticking out of my teeth!
Me and the doctors start speaking of the possibility of it being anxiety-related - perhaps I'm worried about getting new MG symptoms and and focusing on it, tensing it up and causing more problems. I have occasional - but sometimes severe - anxiety problems that are cyclical like that; for example, insomnia from worrying about getting insomnia, panic attacks from worrying about when the next panic attack is going to be, etcetera. This sounds like a likely explanation, even if it might not be the sole factor involved - maybe I did get angioedema but now I'm worried about it and starting to get anxiety symptoms as well.
My current take on it is that I might have angioedema, swelling my tongue, but it only becomes really unweildy when the back of my tongue is tensed up flat, like when I'm stressed or speaking loudly, pushing that big swelled-up part of my tongue forward and making me lisp.
I'm hoping it's that because it will go away, but remembering the scalloped tongue I had last year (and noticing it again this year), I'm hoping that it's not due to prednisone, because I like prednisone! I mentioned a few weeks ago that I had a relapse in my eyes and it's resolving nicely now; I'd be having a good weekend now if it wasn't for this tongue thing!
I do see that a swollen tongue is a side effect listed along with the swollen face and other things you hear more about - has anyone else had this experience?
Well, a few days after I start a higher dose of prednisone (going from 50mg every other day to 50 mg a day to treat my relapse), I start lisping and it feels every now and then like my tongue is too big for my mouth, sometimes I have trouble digging it down into that space in back of my teeth, but it goes away quickly when I get less stressed.
I talked to the nurse at the MG clinic and she says that this is not the typical MG tongue symptom, and I agree - the tongue actually feels too strong, not weak, and it doesn't get worse just by using it more. They tell me to go to the emergency room, though, which is pretty much the standard advice for a swollen tongue because you might be having an allergic reaction.
So I do that. The first question the triage nurse asks is if I'm on blood pressure medication, and indeed I am on lisinopril, which is known to cause angioedema which can manifest itself as a swollen tongue. I actually get asked this question a few times and find out that it's not an unusual thing to have happen, and it can happen any time you are taking it, even years later. They just switch you to another medicine to treat your blood pressure (and I didn't even have high blood pressure; they were using it to treat cardiomyopathy which later resolved and they usually just maintain you on it for a few years). After that, it goes away on its own.
But...they want me to stay at the hospital and observe. I talk to five other neurologists/students and they all pretty much agree that this is not how MG manifests itself in the tongue, I was pretty chatty with a group of them for like a half-hour and let them do all sorts of those "push against my hand"-type tests, happy to do it if just for the company, and my tongue doesn't get weaker or anything.
I also start to notice that it goes away when I'm less stressed. I take a shower the first night thinking it would relax me and get my mind off of it and sure enough it's pretty good after that for the night. But when I started eating and worrying about it working right, it gets super-tense again and starts sticking out of my teeth!
Me and the doctors start speaking of the possibility of it being anxiety-related - perhaps I'm worried about getting new MG symptoms and and focusing on it, tensing it up and causing more problems. I have occasional - but sometimes severe - anxiety problems that are cyclical like that; for example, insomnia from worrying about getting insomnia, panic attacks from worrying about when the next panic attack is going to be, etcetera. This sounds like a likely explanation, even if it might not be the sole factor involved - maybe I did get angioedema but now I'm worried about it and starting to get anxiety symptoms as well.
My current take on it is that I might have angioedema, swelling my tongue, but it only becomes really unweildy when the back of my tongue is tensed up flat, like when I'm stressed or speaking loudly, pushing that big swelled-up part of my tongue forward and making me lisp.
I'm hoping it's that because it will go away, but remembering the scalloped tongue I had last year (and noticing it again this year), I'm hoping that it's not due to prednisone, because I like prednisone! I mentioned a few weeks ago that I had a relapse in my eyes and it's resolving nicely now; I'd be having a good weekend now if it wasn't for this tongue thing!
I do see that a swollen tongue is a side effect listed along with the swollen face and other things you hear more about - has anyone else had this experience?
I've also noticed it that it creeps up when I start worrying about it. Like I could be talking for a while (singing actually works well as an engaging verbal pursuit), and as soon as I start thinking about my tongue problem, there goes the tension, and feeling it come on just makes it worse.
I'm pretty sure that this is an anxiety symptom...I'm just trying to train myself not to feel it.
Annette
I think I'm going to approach this worry by trying to approach my entire mood. I think I'm anxious in general lately which is biasing me towards a panicked reaction, so if I work on my general mood maybe I won't be so quick to have these psychosomatic issues.
I had them a lot when I first got diagnosed. I'd think "oh, my legs feel fatigued!" but I'd keep walking to wherever I was going and two minutes later they wouldn't feel that way at all. I'd have little things like this that I would worry if they were MG and I'd find out that I was just tensing my legs and arms myself. The problem is that you can get your mind off your arms and legs very easily, and find out a few minutes later that they really aren't fatigued, but when you are talking to someone, you have a lot of trouble keeping your mind off your voice, and when you are eating, you have a lot of trouble keeping your mind off your tongue.
I do see the importance of recognizing true symptoms of MG for what they really are though - I spent about a month thinking that my diplopia was probably due to stress and lack of sleep before a doctor told me that I should get it checked out and I did. But I also acknowledge my anxiety problem for what it is too as I've struggled with it for most of my life (I've had bouts of panic attacks, insomnia, and even depersonalization disorder). There's a line I have to walk between the two here, which is difficult, but after seeing so many doctors these last three days I'm calling this one for anxiety.
Many doctors will miss this entirely (even experienced doctors).
You are keeping a close watch on your symptoms. And it sounds like you are doing a good job, keeping your doctor's attention focused on your symptoms.
(... always something, huh? ...)
Sending positive thoughts your way - Ross