Smokey, if you have a minute can you talk about your balance problems? The reason I ask is that balance trouble was my first symptom. I would lose my balance while walking and have to take a step sideways to catch myself. It wasn't until this problem got much worse that I realized the trouble is weakness in the muscles in my sides. Now that weakness has progressed to such a degree that when I'm weak, I swing side to side from the waist up when I walk. When I'm really weak, I can't walk at all because I can't hold my upper body vertical.

My neurologist said he's seen 800 myasthenia patients, and none of them walks like me. And yet I often hear MG patients saying they have balancing troubles. Can you tell me what you think is the source of your balance troubles--which muscles are not doing their job? Thanks. Anyone else who has trouble with balance, I'd love to hear your answer to this question. I am still having nagging doubts about my diagnosis, because evidently it's not normal to have MG affect the side muscles so strongly. But maybe it's more common than the doctors realize.

Abby

Don't doubt your diagnosis!

Do you want to see the bruises and cuts I get from being off balance? I think the walls and doorways have more though. I don't have as pronounced a girdle/trunk problem as you do but it's there. Just like some MGers have more swallowing/choking problems than others, I'm sure there are those who have more issues like yours.

It might be that MGers tend not to talk about those things. Think about any appointment you've ever been to with a neuro. Appointments are short, they don't necessarily remember all of the details and neurologists often go straight to "What treatment do I give now."

What position do you sleep in? Do you tense up while you sleep? Have you had a spine MRI to look for nerve problems? Have you had your B12 rechecked? There are so many other things that could contribute to those muscles of yours being weaker, including the fact that you simply have that "type" of MG.

I tend to get progressively weaker and, if I don't rest, then I crash. Everything gets very weak. Think of a drawing of a bell curve or a hill. I'm fairly steadily horizontal at first, then I go downhill slowly and then I completely crash, ending up at the bottom, lying there waiting for strength to return. I'll bet doctors don't think about MG in those terms. And Alice, if I can use her as an example, seems to start way down the hill and then fall off a cliff if she does too much. Please correct me if I'm wrong, Alice! I have to add that my speaking muscles are usually spared because I don't talk much during the day. Those who talk more, well, have trouble with those muscles.

Does any of this help or am I babbling?

Annie

I also have a balance problem. Happens 3-4 times a day. I can't decide if it is muscles or double vision. I bump into doors ect.
Mike

Yeah, especially after working so hard to get it, right? But I'm convinced enough that I decided to start the Imuran today. I would have felt better about this if I'd seen a dramatic change with the IVIG--but before I started I was at my weakest ever, and now I'm about as good as I ever get...so that's something.

Right, that's exactly it. I talk about my worst symptoms, and sometimes don't even get around to mentioning the mild ones. He, on the other hand, spent most of his time examining my eyes, even though I didn't complain about them!

I wake up feeling almost non-MG strong (except during a really bad stretch). I get weak (I _just_ figured this out!) after sitting up straight for too long. That makes total sense, because I'm wearing out those side muscles--I use them to hold my body upright when I'm sitting up. The day I ended up at the ER, I had been at the movies with my family. Usually at the movies I slump way back and put my feet up, but this time there was someone in front of me, so I sat up straight. I had a really hard time getting to the car, even with my strong husband's support--he had to carry/drag me. Then I was confused: why am I so weak when I've been resting? Now it makes total sense. Also, my Sunday morning weakness (church) and my weakness after my ASL class, and after the philosophy class I teach sitting down. I had been putting it down to mental energy expenditure.

Anyway, I feel more confident in my diagnosis when I think of this, because now it's clearer to me that this is what is meant by fatiguable weakness, which is the hallmark of MG.

Thanks so much for talking this out with me. It helps immensely.

Abby

Mike, I can imagine that it's both. It took me forever to realize that my muscles were weak in my sides. I don't feel any sensation there--it's just that when you move, your body starts leaning in one direction, and then your side muscles (and back, too, I'm sure) clench up to stop you from going too far. If those muscles are weak, they don't clench enough, and you lose your balance.

Journal, journal, journal! It has taken me almost a year and a half to figure out the connection between my tiltiness and sitting up straight. I'm not saying that's the only time I get tilty--but there's definitely a connection. If you can figure out what's triggering those episodes, you might be able to avoid them.

Abby

Hi Stellatum,
Bear with me as I don't get online as often as some and I have several irons in the fire
OK, I noticed about 5 years ago I would get pain in my face - mostly left side - it got worse ea winter - now I think it has two factors - one is dryness - second is heat. I would put a small electric heater under my desk and when it came on the pain would follow. I would notice this when driving also. I read that MS is heat affected so I could see that MG is related and likely sensitive to heat..
Then, as the pain got worse I started to have balance issues - walking - driving - several times I would have to pull over and wait a few minutes to feel safe enough to drive. Went to my PCP, he thought it was allergies/sinus's - sprays and meds did not improve it. Went to ENT - ran bunch of tests - nothing... Basically said go home and deal with it... It got worse ea year and many days I would have to have wife drive me home.
I also started having left hip pains, would give out when walking - had tests and everything looked normal I was told - by now my PCP was thinking I was either nuts or a wimp, I was getting embarrassed to complain - tried to keep it to myself yet I was getting worse.
Thankfully I changed PCP and the new guy was familiar with B12 deficiencies. I started shots last April and felt 100% better immediately! Now, weather also got warmer and thus heaters were turned off - so not sure how that all factors in just yet - still learning myself.
At least part of my balance issues revolve around vision problems. Sitting in front of a computer was almost too much at times - now I am doing much better from the B12 shots but still having some vision issues. I would not call it dbl vision, but like one eye is focused at a different distance than the other - hard to put into words... Sometimes just watching someone talk to me can make me very dizzy, like the eye muscles cannot keep up with the movements?
I was a very competitive shooter until 3 years ago - actually inducted into a Hall of Fame for it, so you can understand I really was aware of vision changes.
So, I am still learning, is balance from vision? Is it from weakness? Not sure - I think combo.
One thing I learned is find a health care provider that believes in you as too many want to fix people with "simple" challenges, not many Dr Houses out there....
Whew - tired from typing!
Smokey

I definitely have a serious balance problem but with all the other more serious concerns it has not been anywhere on my list of topics to cover with my MG neuro. I hit door frames constantly and always on my right side which is the side that my right knee gives out. But even when I am walking fine, I will misjudge the door frame width or something. I really don't know how or why it happens but it's very frustrating not to mention painful.

My migraine neuro (a dif neuro) had me do a test to see if I could walk a straight line and I could and I said, "Thank you for not making me close my eyes." He then had me try to stand on a 'line' with my eyes closed (not walking) with my arms outstretched. I fell right over immediately. You might want to try it. I really wonder what that all meant. He asked me if I was really sensitive to the movement of other cars out my periphery when I am stopped at red light and sense movement. I said, "Yes." But it didn't really help me understand it all any better.

I lose my balance a lot during IVIG infusions too for some reason and then I recover pretty quickly after they are over. I am a 'special case' I hear......debra

I have balance problems that originated with my eyes years ago. A fast turn (walking or in bed) with my eyes open essentially gives me vertigo. I have a compression fracture to remember that by, because I swiveled my head trying to keep my eyes on 2 disabled relatives at the same time. Naturally, this newly blurred world makes things more unsteady.

As to upright stance, if I were not unusally nimble, it would be safer to progress in a crawl. Beyond that, my newly generalized mg means I cannot lock my knees when I am tired. Sat on the driveway in the rain yesterday waiting to get rid of enough knee wobble so I could get inside. Harriet

I have balance issues, too, but not very bad in recent times. I do get tired easily from sitting up straight, I do think sitting straight effects my ability to walk properly. I get bruised all the time, like Annie, from running into things. The reasons vary, sometimes my body is tired and it doesn't quite move the way I want it to, and other times I have slight double vision and misjudge where to step. Walking slower really helps. My kids tell me that I walk like a penguin now that I have MG, even when I think I am doing fine and am not aware of walking oddly.

LOL, I have noticed a "waddle" developing last few months also! I have always had a crooked leg so when I walk my feet tend to point outward, my friends have always teased me when hunting as they knew when they came across my tracks in the wilderness...
There is no doubt some of my balance issues are inflammation of the sinus and ear canals and winter months make it worse - so combine that with MS and wobble wobble wobble...
One things for sure there are bad days but I try to focus on the good and what I "can do " and not what I can't and that seems to help. Hardest part I think is just accepting that I am fighting a tough disease and some days it wins...
No doubt too age and bifocals add to the mix...