I can say that you might also have denial!

I literally dismissed my symptoms since birth until age 41. I always adapted to them. I've had MG since birth but only diagnosed at 41. I became worse during my B12 deficiency. A person needs B12 to make acetylcholine.

You probably want to have a primary doctor check your B12 level and thyroid, if that hasn't already been done. Also your vitamin D level, since that's a common deficiency.

Weakness that fluctuates like what you are describing is classic MG. What concerns me is that you are dismissing the symptoms, such as holding your head in your hands. Classic MG. We're always trying to prop up something.

When I was working a temp job in 1998, I had to walk down two flights of stairs. I nearly fell as well. MG becomes worse with repetitive (stairs) or sustained (constant contraction) activity. Were you better with rest after walking down the stairs?

That's how you need to think of MG. Do I get worse with an activity and then better after I rest?

People with normal muscle strength would not become weak as MGers do. Healthy people would call walking down stairs exercise!

Jell-O is exactly how any of us with MG would describe legs after doing too much. Some days, when I'm weak all over, it feels as though I'm walking through quicksand. I eat slower than others do. There are so many examples (please chime in here, everyone!) of MG.

No one wants MG. And trying to solve a medical problem does not mean one is paranoid!!! You need to listen to your body and your instincts, so that you don't end up in what's called a "myasthenic crisis." Don't let that scare you, but we can get so weak that we can't move, swallow, breathe, etc. If you ever have any one of those symptoms, you NEED to dial 911. It doesn't matter if you don't have a diagnosis!

I hope you don't have MG. But my instincts are feeling as though you do. Why? FATIGABLE muscle weakness!

Are you set up to see a neuro-ophthalmologist? A MG expert neurologist? If not, please get that set soon! Or say where you live and someone might be able to recommend one for you. Geez, someone could at least have the AChR (acetylcholine receptor) antibody and the MuSK antibody blood tests done!

Don't kid yourself, okay? This can be a serious disease.

Annie