Help!!! Am I the only one who has this problem? I was driving my kids to school this morning and I was having to fight to keep my eyes open. It wasn't a lid problem, it was a problem with the muscles controlling my eyes. They just wanted to roll up and I kept pulling them down and then sometimes I'd lose my "grip" and I'd get double vision and have to concentrate to pull out of that. Sometimes it would just slip away in an instant and my eyes would be closed again. I had too keep my eyes closed at the stoplights to try to rest them. The effort of trying to keep them open actually made me nauseous. The drive was agony and by the time I got home I just fell into bed and slept for 2 hours.

Has anyone ever had this problem before?!?

Holy Crow! Bluesky....I've learned so much from this forum since I was dx last week, but when you said this, I thought you meant you were so tired you couldn't keep your eyes open....I'm so sorry you are having this problem, I can't conceive how difficult this must be......my MG is totally "limbs" so far, & I pray it doesn't get worse....wish I could help...but someone will come on I'm sure to assist you....keep your chin up....I hope they can help you, I'll keep you in my prayers....

Dottie

Usually when you're that bad, you shouldn't be driving! It's like driving drunk. No offense but it's dangerous. I won't drive when I'm that bad. I have gotten worse while I'm out running errands. I have things I do, like take an extra little dose of Mestinon, etc. but that's up to you and your neuro to work out.

If that does happen when you are out, turn on the air-conditioning in your car and put it on vent so it's blowing at your eyes/face. I think pulling over somewhere first for five minutes or so is a great idea!

When any muscle group decides not to work, you really have to keep an eye on all the others (like hands gripping the stearing wheel!). Sometimes muscles can get weak so slowly that you don't even notice it. It's more noticeable when they get weak quickly. When I had my crisis, I had been getting progressively weaker, slowly. When I went in to urgent care, the doctor said I couldn't even squeeze his fingers. I hadn't even noticed I had gotten that bad.

So if even one area of muscles are getting that bad, you need to put on the brakes (literally and figuratively) and do just what you did - rest or sleep!

Please be careful. And it may be worth a call to your neuro if you aren't doing better. I'm glad you made it home safely.

Annie

Annie, Great advice all around!
Ally, you'll have to be very careful if symptoms are sneaking up on you like that. I kept ignoring those sneaky signs and then dropped to the floor, conscious but completely unresponsive. Do you have a neighbor that can drive your children until you get controlled a little better?
My MG is generalized and usually my eyes are one of the last muscle groups to get involved to a point that is noticeable. My lids almost never droop but the eyes themselves? The jiggling/jerking side to side, a pulling sensation with kaleidascope vision, the normal double vision, and a just worn out-can't seem to focus for longer than 10 seconds.

Kate - what a double edged sword! Got a gorgeous guy right there in your face and can't focus on him? But to have Gorgeous be in the position of professionally verifying your symptom. Why couldn't it have been part way through so you could have the best of both worlds!

Everyone - take CARE!

Yeah, I know, I need to be careful. My kids could take the school bus, but it gives my youngest a migraine. Otherwise, because I'm so sick and never know when I can run errands I get my groceries delivered from a local store and everything else delivered from Amazon (I love that!).

The problem right now is that I don't know how long it'll be until I get a diagnosis and it's hard to live without a car. Still, I'm going to try to cut way back on driving.

Ugh, I need help! I need medical treatment!

Anyway, thanks for the good advice.

Ally

Ally,
I'm just curious about something. Do you smoke or drink coffee, eat a lot of chocolate? We had a thread going awhile back about the effects of these on the EMG tests. All these, it seems, could scew the EMG results, and I may become the living proof of that here soon. If you do any of the above, before your next EMG refrain from smoking for 24 hrs. (MUCH easier said than done), coffee and chocolate for at least 3 hrs, and don't take any Mestinon for 24 hrs. before (unless of course you start into breathing difficulties!).

Interestingly, my first EMG was negative and I had smoked on the way to the test.

When I got my formal DX, I had been in the hospital and no smoking for about 24 hrs.

My decrement was huge! in the shoulder was 76%, face 23%.

My last EMG's showed no decrement - I smoked on the way in having been told it didn't matter when they were checking the peripheral nerves. But I was so weak in the neck and upper back that I couldn't sit up or hold my head up.

I will be going in for an SFEMG soon. I'll be SURE not to smoke or drink coffee before.

I think this is another example of the patient figuring it out before the med community! When I had my first cervical discectomy the surgeon was trying to get me to use bone bank bone for the fusion instead of my own bone. I insisted that my body wouldn't know what to do with super sterile bone because I have smoked for so long. In six months I had fused as well as they generally see in one year.

Guess what! By the time I had my second fusion (4 years later), he said that "they" had discovered smokers heal better with their own bone! And he said it like that's something they figured out on their own: he had forgotten our conversations on my first fusion! UUGGHH! Doctors!

Just a quick disclaimer - I know I need to quit smoking, but I discovered the hard way that most of the quit smoking aids (Chantix, patches, etc) are no no's for MGer's so this is going to take a major psych job on myself and right now all my "psych" is going into staying somewhat functional, and maintaining with docs!

As you can see, even though I had the formal dx in 2004, we are AGAIN trying to confirm my MG before treating (new neuro due to insurance changes). I am learning that even with another docs notes, tests, etc., if a neuro doesn't see it for themselves, it doesn't exist! That puts us all in a very bad place since, as you know, our symptoms wax and wane.

It's ridiculous that we have to allow our symptoms to get so bad before a doc appt (or even push ourselves to an unsafe point before an appt), just because we know if they don't see it, we don't get help! But....that's the way it seems to be. I think once they get me going again, I'm gonna start a grass roots movement to get them to understand that they need to trust the patient a little more!!!

Good luck, Hope you get your dx soon!

Becky

i think i have MG too.. thanks to a google search that led me here. i suffer from the same thing (eyes won't stay shut).

Thank you for your kind words, Dottie. This one really took me by surprise. It seems like every day gives a new symptom or a new twist on an old symptom.

I'm glad yours is limbs only. Thank goodness it sounds like you're getting great medical help and I'll bet they'll be able to stop yours in its tracks.

Ally

I had that problem for months! No one would believe me - not even my hubby - people just thought I was being dramatic......if you look in the rear view mirror after resting your eyes for a bit, you'll notice that one eye is waaaaaaaaaaaaaay off balance. Your eyes are literally rolling around in your head.

I had to stop drviving all together until I started pred - voila (!) problem solved!

You may want to rest your eyes by icing them down as well - that is what my neuro did to test me for MG...........

Sounds like you need some stronger meds pretty soon!

Hang in there!
Erin

Annie, you're absolutely right. I had no business driving like that! I had never experience a problem that bad and I wasn't even thinking straight, I was trying so hard to keep my eyes working. Next time I'll just pull right over and call someone to pick me up. The air conditioning is a really good idea too.


Erin, thank you for telling me about your experience. I didn't know what to make of what happened this morning. I couldn't remember anyone describing this eye problem and I was so confused. Is this more evidence of mg? Or is this something else?

Anyway thank you both for telling me! I've been checking in all day, wanting to see what everyone thought. It's so good to be able to tap your mg wisdom!

Ally