Hi: I'm new here (just getting started on obtaining a diagnosis) and have most of the symptoms everyone here has brought up. However, the one that is foremost on my mind right now is that I've had some darn near catastrophic falls over the last couple of years. I fell going up the stairs a week ago Friday and I can barely stay on my feet for more than a half hour or so. Saw a doc at urgent care last Thursday and he says I have a hematoma (after xrays showed no broken bones) with ecchymosis on my right leg. I had two falls last year that really did me in (for weeks, not days). I've given the falls a lot of long hard thought, and I simply can't attribute them to anything specific...not dizziness, not a slip, not a misstep. Now I do have a lot of problems navigating as I have to look directly at the ground to avoid tumbling over some trifling obstacle and my depth perception is at about zero, but I'm darn careful now. I guess what I simply don't understand is why I get SO damaged every time. Is this common?
One thing that I am aware of, is that I don't seem to be able to catch myself; I fall like a tree in the woods...don't get my arms out, nothing.

I'd be deeply grateful if anyone else has experienced this and has some kind of explanation.

Falling was one of the first things that happened to me. I think my leg muscles just gave out. I had some dandy falls including one down a staircase. I wasn't dizzy. I didn't trip. I was just happily walking along, and then I would hit the floor. I haven't had any falls since I've been being treated for MG.

Hi, Dyankee. Do your doctors think you have MG?

It's possible that you have "foot drop," where it's harder to pick up your feet. Have you had your vitamin B12 tested?

It sounds to me like you have muscle weakness, especially if you can't catch yourself during a fall. Untreated MG can be dangerous if you become too weak. Do you have shortness of breath? Double vision? Droopy eyelids?

By "damaged," can you clarify what you mean by that? When a person falls, they can get bumps and bruises, etc. but those heal up.

An eye doctor can assess your vision, in case that's a problem.

You know, experts say that looking down is the worst thing you can do because it puts the focus on falling and not on standing!

Yes, I've had bad falls. They are usually due to not being able to pick up my feet well enough. Though I recover fairly well afterwards. It's not fun to fall!

I hope you'll get all of this figured out. How long have you had this problem?

Annie

Hello, Annie, and Thank You: I've had the exhaustion for quite some time now, and it always worsens in the winter, though this winter has been worst of all. The first fall I had was about three years ago; luckily I landed in the grass from the top step of my porch but I was clueless about how I fell. Second was Christmas week a year ago; fell whilst I was out walking the dog (in bitter cold, I might add) and did what-all to both my knees. I was finally recovering from that when I fell again in April coming down my living room stairs. I've had bad bouts with breathing problems that come on like an express train, especially when working in the garden in the summer. I know better than to push the envelope now. Just recently I started having trouble keeping my eyes open, and, darn it all, nearly failed the eye exam at the registry 'cause I was seeing double. That comes and goes. It's the exhaustion that really troubles me the most. I have to plan EVERYTHING now...even a trip to the grocery store. Can't stack two things on the same day. I shoveled the driveway for a measly hour a couple of weeks ago and spent three days in bed. And when I get that tired, I get sick; pick up the first thing that comes down the road, and then have to get into the doc for pneumonia. Oh, and the choking. The worst bout I had actually started when I was sleeping, and for a few minutes I thought I was going to strangle to death on my own spit. I broke down and cried at my new primary's office this morning; I've had to give up everything that means anything to me; my violin, my friends, long walks with the dog. BTW, my primary was clueless; didn't have anything to offer 'cause my antibody tests came back negative. Lastly, I've learned that the thymus irradiation I had as an infant might be contributing to this, but nobody in my locale seems to know anything about it.
Best,
Laurie

I had symptoms of MG for several year before diagnosis. When I started falling, my appointments and test got bumped up in priority. I was also started on mestinon, even though I did not have a definitive diagnosis. I am antibody negative and diagnosed by a single fiber EMG. MG is rare, few neuro have ever seen it. You need to get to see a neuromuscular specialist at a large teaching hospital so you can get a proper diagnosis and treatment. Are you close to Mayo clinic, john hopkins or cleveland clinic? If not try the MDA site, they have clinic in many states.

Life does get more manageable as we accommodate our life style. I have had many falls both up and down the steps. I only use the steps once a day and take my mestinon before hand, go very slow, one step at a time and use both hands to support me. I cannot even carry anything on the stairs,

The need to ultra-plan your life is very true for most MGers. In time, it becomes second nature, unfortunately. At first, if I had a good day, I would try to do more. I learned the hard way, by falling, that I cannot do that. You will pay for it later in weakness, sometimes for days. You need to slow down until you get a proper diagnosis and treatment, and most probably even after that.

GOOD LUCK
kathie

I have not been falling down since treatment. When I did fall, being careful had nothing to do with anything. I had absolutely no warning. The muscles just gave out and down I went. I also had other episodes of dropping stuff out of my hands. It was really puzzling when I fell; I would just sit and wonder how I got down there.

Hi, Kathie: Thanks for sharing so much with me; it makes me feel a lot better about what I've had to do. Especially that part about neurologists not knowing much about MG, that's a great warning that I will heed. My primary ran three blood tests for antibodies, tested strength in my arms and legs by holding them and telling me to push. She decided that she didn't know how to help me, and suggested I call the neurologist I saw recently for an aneurysm they found (sadly enough I had the MRI for dizziness). I scheduled an eye exam for day after tomorrow and I'm hoping that I might have some positive outcome from that since I've been seeing the same fellow for at least 15 years.

Again, thank you for your so gracious response.
Best,
Laurie

Gosh, Southblues: That's exactly what I had to tell my (new) primary today; that I didn't have a clue how I fell. Just went flat, with no attempt to catch myself, fling my arms out, nothing. It doesn't help that I literally have to stare at the ground when I'm walking, 'cause just about anything can throw me. I guess I'm glad to hear that I'm not the only one. Although I haven't fallen down an entire flight of stairs...yet...boy, I can sure empathize. Gives me a mental picture that makes me shudder. Be darn careful on those stairs!

The same thing is happening to me!Even as i changed my medicine from MS Contin and Oxys fro breakthrough to Fentanyl and MSIR for Breakthrough(I have been on Fentanyl for two years in 2007-09) I started up the small flight of stairs with a landing 5 steps up,my brain had a signal of 90% power but when i trudged up only 15% power was dished out and my legs just "Folded up"and Down i went with no arms out or anything to break or grab onto!This happened again,and terrified Doctor might blame the Fentanyl i went to work myself as i have studied medical treatments and condition's for over 40 years as a hobby.I am NOT a Doctor but i do learn a lot from reading and any other way of study!I have one of 5 condition's called disk degeneration and that affects signals and pathways up and back down my spinal cord.And also puts up blocks that can slow down signal transmission. Theres nothing i can do about it but maybe this can answer a question for you! The Docs want me to go and see a therapist for pain.I know that thats for a precursor for a wheelchair.No big deal.I have had a great full life and was a stuntman at 21 so ina wheelchair at 56-57 cant hurt!I wish you Pain Free Peace,Rocker Dan

Hello, Rocker Dan:
I'm so sorry you're struggling with pain and medication...Darn! Life is hard enough, isn't it? But you've brought up an interesting point with your percentage analogy: in all cases, my falls have taken place when a large percentage of my attention was elsewhere. Now I've been aware for some time that I have to attend 100% to my driving; I can no longer "multitask" as distractions can overwhelm my attention. For instance, the other night I pulled over to let another car (with intensely bright headlights) pass, and then...ULP!...pulled back out immediately in front of another approaching car. He was so mad he tailgated me for another mile before he turned off. And I was very, very disturbed that I'd totally missed seeing him. How could that be? I am so darn careful.

Best,
Laurie