I am 37 years old. At the end of April, I started having problems with double vision and I think with what people call "swim head" (it feels like your head is in a fishbowl). I chalked it up to insomnia, partially because I didn't want it to be something else (which was a really stupid thing to do) and tried to get more sleep. I went to an internist for another problem (pulled muscle) and noticed that my eylid drooped, and she asked if my eyelid had always drooped like that. (I actually think it did, and had noticed it myself, but again, I wanted to dismiss it as "droopy eyelid syndrome" as you get with sleep apnea, which I have.) She said "you should see an opthamologist" so I scheduled an appointment.

Curiously, it got better in this time. It was really only bothering me about five minutes per day at the point I saw the opthamologist, whereas before it had been more like twenty. His (resident? intern? Someday I may know the difference.) checked my eyes and noticed the Cogen's twitch but really nothing else. They gave me an ice test (which actually came back negative for MG) and an acetylcholine receptor blood test (which came back positive for MG).

After this initial exam, they didn't really know what it was, and I became more and more anxious the rest of the week until the double vision got much worse. The next Saturday I pretty much spent the day in the house, but went out later and my eyes went crazy! My left eye would pull very hard to the side. It got so bad that I went to the urgent care facility for opthamology and they looked at it. Basically, as I'd relax mentally, like if I was doing something else, it would get much better, and when I'd worry it would get much worse. I found that to be true the rest of the day. What did help was seeing that it could get better, and even that thought would relax me, so I'd do better. I returned to work and really it's not that bad, though I can no longer read with two eyes.

I also got an MRI of my brain and eyes yesterday, and should have the results on Tuesday.

The blood test came back this week, after the second visit, and I've been dealing with that, and the thought that it changes a lot of things. I'm really worrying about it generalizing, and as I'm generally an anxious person, I seem to see symptoms of it where it's not. Like right now I'm focusing on how my arms feel as I type, but I didn't really before I watched a video this morning about how someone had ocular myasthenia gravis which suddenly affected their legs. I have had hyperventilation before, and shallow breathing (I don't know if that's what you call it, but it's where you've inhaled a lot, but didn't exhale it all, and you keep taking little breaths instead of exhaling your full lungs fully), and keep thinking "oh here comes the breathing problems". I want to fight this aggressively because it seems that there are a number of things you can do to keep it from generalizing, but I have a few complicating factors (for instance, I'm on beta blockers for a cardiomyopathy I used to have that went away and they are maintaining it, plus I am obese) which I'm afraid I'm going to find out limit my options for treatment. Of course, I know none of this, but I worry. I have an appointment with a neuro opthamologist to follow up on the result, but that is not until the 26th and it seems that they are typically very booked. There are at least two myasthenia gravis clinics in Chicago (University of Illinois at Chicago and Rush) and I might go to one of those, especially if it is easier to get an appointment.

Also, this week right after I was diagnosed, I went to an internist for anxiety, and he saw my acetylcholine test but wanted to check a few things (diabetes, thyroid) just to rule them out. He mentioned that he could give me prednisone now but was a little reluctant. I guess if I have a question it would be: would you let him do that, perhaps first if he consulted with the neuro-opthamologist or my opthamologist? I'm very anxious to get started because I've read the few things that say if you nab this thing quickly there's a better chance that it won't spread.

I'd be curious to hear from people who have had cardiomyopathy and/or some other type of heart failure, and how that affected treatment.

Also, I tend to be something of a loner, so I live alone, and don't have close friends around me, or even really neighbors, which might have to change. I have family about an hour away and could possibly work from home, so I may be able to adapt if things get bad, but I'd be curious to hear how people dealt with having to make some major changes from that sort of lifestyle. This has made me realize how beneficial it is to connect with others now, and how much the people I do have contact with care for me.

And I would like to know if I should ask for other tests. It seems the blood test I had is pretty definitive, but I have not had the Tensilon test.

It's good though, that I don't drive (I'm in a city where you don't always have to) and that there are a lot of good facilities. I do feel that I need to get to know more people around just in case I need help though. The isolation is probably one of the scarier parts of my predicament, even if my symptoms have not been very bad.