Kimber,

My Dad fell quite frequently, but his was a collapse more than a lean. I tend to veer into doorways and walls when weak and bend down too far (and hit my head). I think I just lose core control and neck control since the same thing can happen in the tub if I lie back.

I don't know why you don't get visual warning, except that our brain may be disregarding a lot of the bad information it gets from our eyes. That happens with children and lazy eye. Focus may have something to do with it too. I don't know the mechanism skaters and ballerinas use not to get dizzy.

I think my Tai Chi over the years has kept me from falling even more than I have. That is primarily proprioception not visual since I can do it with eyes closed. b.

My eyes and their weak muscles are usually complicit to the stumbling.

Back earlier in my MG when the symptoms were worse, I did notice balance problems--sometimes more like I was lurching than walking. I never really knew if it was MG, mestinon, prednisone, or what, but it gradually disappeared and never was very bad.

To narrow it down so you can talk to a doctor you need to try to distinguish between things like vertigo, faintness, etc.--a series of different types of these problems, each with a name.

There are so many possible causes (including MG itself) that range from ear problems, blood pressure, brain, etc, that it takes some sleuthing to narrow things down -- including is it after a meal, standing.... Could even be the weekly dose of MPRED wearing off--but should never just assume things without trying to track them down.

One general discussion at http://www.mayoclinic.com/health/dizziness/DS00435/DSECTION=causes (and also wikipedia) can help try to pin-point the actual best fitting medical word for your symptoms and maybe some causes by looking at the particular symptoms.

When I complained about being dizzy to my doctor some years ago, she did this kind of analysis and said dizzy was not the right word, but vertigo for what I had (BPV).

Good Luck!

I have been having trouble with motor skills and balance since I got diagnosed as well. Mine sounds not quite as bad as yours, Kimber; sometimes it's just that I feel I'm about to fall over, notice and catch myself; or if I turn my head too fast I have to take a step in the direction of my momentum. And sometimes when I'm doing something like reaching for an object on the table, I completely misjudge and hit my hand on the edge of the table. I never used to make little physical mistakes like that before MG. I don't really understand well enough to know if it's vertigo or what. I definitely don't feel dizzy. I don't have double vision at all right now though (unless! I really do and my brain is just editing it out really well, and this clumsiness is the only indication).

I had a problem with my balance when I was first diagnosis. My athletic skills went downhill after that. Just another mg symptom. It will pass.. God bless you. Cabbage7

I also have balance problems that are also not like yours.Mine i think are from weakness in my upper legs muscles--quads and hamstrings. My lower legs seem ok now. I have not yet fallen all the way down but in catching myself I have pulled muscles in m lower back and in my hamstrings.
Oh the joys!!!
Mary

I was already clumsy but my body really acts up when I have double vision! Since I can't focus enough to clean I use that as my excuse for an untidy bedroom hehe.

For me, the muscle behind my right eye gets really weak and throws me completely off. No idea what's going with your particular brand of tilt-a-whirling though... interesting.

I also have the symptoms that most of you are referring to like running into doorways, reaching for objects and bumping it or missing it etc. I also notice I trip more when I am tired. Most probably because I think I am lifting my feet far enough off of the ground when I walk but am actually dragging my feet.
These other issues are different. Along with the balance, when I hold a cup if I am not careful or don't use 2 hands the cup will tilt and spill the contents onto the ground. An MG issue would be more like dropping the cup or having a loose grip and neither are the case. The cup just tilts and I am unaware of it. My neurologists say that these things are not MG problems.

Kimber,
what I have that is most like yours is the cup that tilts or the iPad that suddenly changes orientation because it is on my lap and tilting and I don't realize it. My stumbling is definitely related to dragging my feet and when I am not doing well, I find myself tiptoeing on one foot probably to get the other off the ground, but since it is usually at night , I am more interested in getting back to bed and asleep than figuring out what is going on. :-)

Frankly, I don"t think the neurologists know half the kinds of symptoms people with MG have. That is partly because they are sufficiently weird that we do not report them, since what is bothering us the most already sounds crazy especially when it comes and goes--ghost moons, accordion breathing, tiptoe walking, most everyone with hiatal hernia symptomatic or no, and sphincter troubles (those are mixed muscle muscles, like eye accommodation, and of course the abdominals are involved as well). Still it is wise to consider other explanations when the cause is not obvious. We are likely to have other autoimmune diseases.

The focus on the eyes (pun intended), I think is historical, and the present reluctance to consider or diagnose MG without or until eye findings. My PCP immediately thought of MG when I was reporting frank diplopia, but reassured me that it needn't generalize. I had to remind him that I had been looking for explanations of unexplained episodes of weakness for at least 35 years! b.

b, I once asked my neurologist if our bodies' thermoregulators might be off, since I have heat intolerance but also extreme chilling after I come in from the cold. My body just warms up and cools down too easily compared to others. He said, "No, that is not part of MG." That was neuro #2. He was just too quick to say he knew what the symptoms were or were not, so I think physician adherence to classic symptoms is a problem when dealing with us and that you're right that the full range of symptoms aren't included or appreciated by the medical establishment.

If my gaze is level, I'm o.k. If I look up in conversation, while sitting, inevitably I begin to lean. The longer the conversation the more I lean.
I also have gotten close and personal with doorways and walls,
Larissa

most of my thermostat problems came and went with mestinon. I do however now have a preference for a house temperature of about 50-60 degrees (but I compromise with Margo at 64--she has a blanket and I a fan at 64).
All of my balance issues also left when I no longer needed Mestinon--either because I was in remission from MG or because of the Mestinon or the gravitational anomalies in the neighborhood calmed down.
Hope things balance out for you.

"A well-developed sense of humor is the pole that adds balance to your steps as you walk the tightrope of life."
William Arthur Ward