[Stellatum]

When my symptoms are bad (typically late in the evening), it's hard to climb the stairs. First, the muscles that I use to lift each leg don't work well. Second, the muscles that I use to straighten my leg as I rise up to the next step don't work well. I can use these muscles, but it takes extra effort.

By the time I get near the top, if I'm really bad, sometimes the muscles stop working altogether. I try to lift my leg and nothing happens. It occurs to me that the best word to describe this state is "paralysis," even though it's only temporary.

But it's not a different problem from the problem that makes it hard to lift my legs. It's just a greater degree of the same problem. In both cases, the signal's not getting through to my muscles. When the signal is partially blocked, it's hard to lift my leg. When it's fully blocked, it's impossible to move my leg.

So, I'm asking: is "partial paralysis" a more accurate way to describe MG symptoms than "weakness" or "fatigue" is? These are just words, I know. But I feel like my friends don't get it. They think that I have a disease that makes me tired (and we're all tired. My friends mostly have lots of babies, and haven't had a full night's sleep for years).

Abby

[pingpongman]

Are you on Prednisone? When I was on 60mg I got to the point I could barely walk. My neuro-muscular dr said I had to get off Prednisone as fast as possible. The Prednisone was destroying my leg muscles. When we started reducing my dose my leg strength improved right away.
Mike

[southblues]

I suspect that partial paralysis is a better description of what is happening. It is not that we are too tired to use are muscles. They just don't work. It is like being shot with a poison dart by a hunter in the Amazon.

I only had one episode of total paralysis. It lasted just for a moment. I didn't feel anything but puzzled as to what was going on. I was aware of not being able to sit up correctly. I was aware that I was not breathing.
I felt no fear, no pain, no sensation of suffocation. Nothing.

That is until I hit the dirt. Galloping along on your horse is not a good time for paralysis to hit.

Most of the time, I do pretty well. I am droopy eyed and my voice goes all wonky and I walk funny. My students think I smoke pot........

[Stellatum]

Thanks, Mike. I'm not on Prednisone, just Imuran.

The only other muscle besides my leg-lifting muscles (um...I'm sure that's not the proper term) that I have ever had completely cease to work is the soft-pallet muscle at the back of the roof of my mouth, used in swallowing. That hasn't happened for a long time, though.

I am teaching a ninth-grade English class this year to a group of nine homeschoolers. I'm thinking of sending them this message:

Hi, everyone. I wanted to tell you that I have a chronic neuromuscular disease similar to MG (it’s called myasthenia gravis). The symptoms come and go unpredictably. Mostly I walk normally, but sometimes I use a walker and avoid standing. Please let your students know, so that they’re not alarmed if they see me having trouble. It’s not dangerous or contagious. Thanks,

What do you think? Good idea? I'm trying to say just enough without saying too much.

Abby

[pingpongman]

That sounds ok to me. Sounds simple and to the point. They should be able to process that.
Mike

[Stellatum]

I wrote:

Originally Posted by Stellatum

Hi, everyone. I wanted to tell you that I have a chronic neuromuscular disease similar to MG

I meant "similar to MS." I don't like to use the word "autoimmune" because people think I have AIDS. But I think most people know what MS is. I guess I also want people to know this is a "real" disease, in the sense that it's acknowledged by mainstream medicine (though I'm sorry for the people who have real diseases that aren't!) and that it's serious.

Abby

[4-eyes]

Say you are one of "Jerry's kids" and also point out that your voice my sound funny. It will be important to the parents to know in that case that you are not intoxicated (take that from someone who learned that the hard way!)

Good luck!

[southblues]

It sounds like a good idea. With kids that age, they may start talking otherwise. Like I said, I hear rumors that I use drugs. And I don't. I have not made it known at work except with my closest co-workers that I have MG because I am afraid of discrimination.

[Stellatum]

Thanks for the tip about the voice. It's a two-hour class, and although my voice is usually fine, it might get slurry towards the end. If it does, I'll tell the students it's their fault--they're not participating in the discussion enough.

Last spring I went to my son's senior breakfast (graduating from high school), and had a really weak spell. As my husband was dragging me out (not literally, more like half-carrying), the chaplain asked if my foot had fallen asleep, and my husband (who's a teacher at the school) explained that no, I was drunk. That was hilarious, given the context. It was easier to explain than the truth!

But I read about a nurse who was fired for being drunk while she was on-call. She wasn't drunk--she had MG and answered the phone sounding drunk. She sued and won. When I'm weak I walk drunk as well as talk drunk, which makes sense, because I understand that alcohol inhibits neurotransmission. Do you suppose Mestinon could be used to sober someone up?

Abby

Abby

[alice md]

The original and full name of this illness is Myasthenia Gravis Pseudoparalytica.

Or in plain English-severe fatigable muscle weakness which looks like paralysis (probably meaning stroke) but is not, because there are no anatomical findings (such as one would expect to find in the brains of people who die of stroke).

Friedrich Jolly coined this term and he was also the first to document objective evidence for a physiological abnormality. He showed that on repeat nerve stimulation the muscle contraction rapidly diminishes.

Patients with myasthenia are also tired, because it is very tiring to constantly think what you can or can't do, when trying to perform simple daily activities that don't normally require actively thinking about them.

And it is also very tiring to have to think of how to explain this to other people and justify your peculiar behavior.