Hello, I've been experiencing frightening symptoms for the past couple months, and the several doctors I have been to cannot diagnose me. I've been reading about Myasthenia Gravis and am very intrigued. Some of the symptoms I have do not seem to be linked to MG, but I figure the people in this forum who have been diagnosed might be able to shed some light.

(First of all, I have had a slightly droopy eye since I was 13. A friend noticed that when I laughed, my right eye would close before the left. Now I am 21 and the droopy eye is much more noticeable, at least to me in the mirror)

Anyway, 2 months ago I was at work and felt a spasm in my throat. Then I felt severely lightheaded. I went to the ER and had many tests done: blood, urine, CT of the brain, EKG, chest xray. Everything was negative and they gave me anti-dizzy pills. Later, I went to my dermatologist because I was on Accutane during this event: I saw my derm to make sure this was not a side effect of the Accutane. It wasn't, but I quit the Accutane anyway.
Then I went to an Ear Nose and Throat doctor because I had a continuous lump-feeling in my throat. The ENT stuck a tube down my throat and saw nothing wrong. Also checked my ears for the lightheadedness, and they were fine too.
I then went to my regular General Practitioner. She diagnosed me with panic attacks (my symptoms are very similar to panic attacks, although they happen so often I really doubt that I'm in a constant state of panic)
She gave me Xanax. I also have irregularities in my heartbeat, PVCs and palpitations. And mild hypothyroidism (I just finished my 1st month of Synthroid and only feel minor improvement)
I went to a cardiologist for the PVCs and I am waiting for the results of my heart ultrasound and stress test.

The reason I believe I may have MG is the eye droopiness (it gets worse when I am tired, and my right eye never seems to want to focus on what I am looking at), and I cannot look up or to the side for 30 seconds. I get a terrible headrush and feel like I will black out or I have to squint my eyes.
I also get muscle weakness when doing regular activities (to the point that my legs or arms are shaking) and after resting for a while it's OK again.

Should I ask to be tested for MG? I don't want to sound like a hypochondriac, but I would like to know if anyone felt anything similar before being diagnosed.

Thanks!

Hi, Chrissy, and welcome. I hope you get answers soon. It's so scary to have weird symptoms with no explanation.

Not all of your symptoms sound like MG, but some of them do. My first symptoms were so confusing that my first diagnosis was an inner-ear virus--it's not that I was dizzy, but I was losing my balance because of truncal weakness, but I didn't understand that for months. I hope your GP will send you to a neurologist. There is a blood test for MG.

Many of us here who were difficult to diagnose were finally diagnosed by a neuro-ophthalmologist, a special kind of eye doctor. If your GP isn't willing to think past the "panic attacks" diagnosis, I would suggest emphasizing your eye symptoms and asking for a referral to a neuro-ophthalmologist. Those guys seem to be really good!

I worried like crazy about sounding like a hypochondriac when I first had symptoms, so I know what you mean. But none of my doctors ever treated me like that, even when my blood tested negative. I think that it's a good idea to give the doctor specific examples of your symptoms. So for example, don't just say "my arms feel weak when I use them a lot"; say "when I'm blow-drying my hair, I have to rest my arms after just a minute." Or whatever. You get the idea. Don't say "I'm tired at the end of the day," say "After six o'clock I can only get half-way up the stairs before my legs start shaking."

I think it might also help to bring someone with you to office visits. I always bring my husband for important ones. He asks questions I forget, and adds details, and helps me remember what the doctor says.

Please be careful. I don't know if you have MG, but you might. It can be very unpredictable, especially in the beginning. An MG crisis is life-threatening, but there are very good emergency treatments. So if you have trouble breathing or can't swallow, or are suddenly very weak, that's an emergency--go to an ER. Also, be especially careful in the heat. Some people with MG find that getting overheated is a terrible trigger.

Please feel very free to ask questions here. Most of us have been through the terrible phase you're in now, the not knowing what's wrong phase. We know how stressful it is.

Abby