I've just figured that out. Church, restaurants, movie theaters--I usually go in fine, but have a hard time getting out. I say that sitting "makes me weak," but it's probably more accurate to say it triggers an episode of severe weakness.

My muscles are also fatiguable in what I think is a typical myasthenia way, but this is not nearly as dramatic and variable, or as severe.

The weakness is not dizziness or light-headedness. When it's really extreme, I can feel the weakness coming over me. When it's milder, sometimes I don't notice it until I try to stand up. The weakness seems to affect my legs most of all, so that I can't support myself, and slowly collapse to the floor. But I feel it all over my body.

So, what's up with that? This is not typical of myasthenia. I thought of LEMS (tested negative once), but my understanding is that with LEMS, the muscles get stronger when you walk. For me, the episodes last from 45 minutes to two hours, and then slowly lift--but the weakness lifts quickly enough that I can feel it lifting. I say, "Oh, I'm coming out of it."

Strangely, I have never had an episode like this upon awakening in the morning.

Abby

Abby, Have you had an EEG? Could you be having episodes of epilepsy or something similar to that? Like a variant of narcolepsy?

It's worth another phone call to your neuro.

Annie

Hmm...I really don't think so, but I'll look into it. I've read about cataplexy. I'm so confused right now. I finally realized that I'm having episodes, and I decided I'm having two distinct sets of symptoms: episodes and general steady weakness. But just this evening it occurred to me that what I was thinking of as steady weakness could be just a more mild episode. Myasthenia waxes and wanes. I just seem to have faster cycles of it, and the intense ones stand out. This description reminds me of HKPP, which can present as brief episodes or long "abortive attacks," or a combination of the two.

I don't think I have two different things going on. It all started together, and it gets better and worse together. There is some "background weakness" that I feel in my arms and neck--I mean steady all day and worse in the evening. But when I have an episode of weakness, it's the same weakness as the all-day weakness--same locations, same feeling--just more intense.

I had temporal lobe seizures (no loss of consciousness) in my early twenties. They went away, and I didn't know what they were (because those were the pre-internet days!) until years later when my son, at the same age, got them. We put him through the wringer with EEGs and MRIs and never did find a cause. He hasn't had one for over a year now. When I had them, I just assumed it was a mental illness, even though I was a philosophy grad student at the time, studying (among other things) the relationship between the mind and the brain.

Abby

Your primary doc could test your levels of Hypocretin. It's interesting that you were diagnosed with seizures when you were younger. Did you know that celiac can cause all sorts of brain issues?

A loss of acetylcholine can affect the brain too, so maybe it's not so coincidental. Just a thought.

Annie

Thanks, Annie. I'm casting my mind back to see if there was any symptom I might have had a long time ago without understanding it that would shed light on things.

I never got diagnosed with seizures. They worried me for a while (this was 20 years ago) and then went away--I never went to the doctor. I haven't had one since.

As for the narcolepsy idea, the thing about these episodes is that they don't make me sleepy--just rag-doll weak.

Abby

You don't have to feel sleepy though. I think your neuro will find it all quite interesting!

It sounds TYPICAL of MG (I get it all the time)-

Think about it - when you are in church, a restaurant, or a theater, you are usually in a seat that only supports about 1/2 of your back, and NONE of your head. You ever stop to think about how much energy it takes to hold your head up? An awful lot, that's how much.

And the head/neck is the only non-bilateral part of our muscular structure - there isn't really anything to counterbalance it, it's basically a heavy ball on a short stalk.

That is why I carry a "camp" rocking chair in my car at all times - it has a full back on it (well, for me anyway - I'm pretty short), so my head is always supported. And I tilt it back so that the weight of my head is taken off of my other muscles. I still get tired, but it doesn't happen quite as quickly in that chair.

Teresa, that's exactly what I'd been thinking all this time. A year ago, my main MG symptom was weakness in my sides. When I walked out of church, those muscles would be really weak, and I'd think, hmm, I guess I'm using my side muscles a lot sitting in that hard, straight pew. Makes sense.

But now my side muscles are a lot better. Now when I walk out of church, the problem is that my leg muscles are too weak to support my weight. I can't think how sitting would tire them out.

Unless...did I read somewhere that sometimes with MG, if you tire one group of muscles, sometimes they all get weak? I dunno. This is really confusing.

Or maybe it's the choir. They're awful. There's this lady with a tambourine who has no sense of rhythm. I'm going to have to add that to my journal.

Abby

Emotions can affect muscles, too. If you really become engrossed with the message at church, or even with the social aspects (seeing friends, keeping kids in line during service, etc), it can wear you out. My daughter is an athlete and I used to go into her competitions feeling peachy but just seeing her perform would turn me into mush---instant DV, no voice, unable to eat the rest of the day. Since the reboot I feel tired, but everything remains "intact." Parties, funerals, etc had the same effect.

Abby, I'm really trying to understand where you're coming from in your recent posts. But I'm getting mixed messages.

Okay, so on this thread you say it must be MG causing the periodic weakness but then on the other one you say it could be HKPP. Or a channelopathy, which I had brought up ions ago (sorry couldn't resist the pun).

So what's really going on? Do you doubt the MG, so you're trying to find another reason for odd symptoms? Is it that you really do believe something else is going on? Are you discouraged due to how long you've been on Imuran and can't admit that sometimes MG just sucks even with treatment? Are you trying to define it so you have more ways to fight it?

Could it simply be that you use certain muscles more and, therefore, they are always weaker? Or is it LEMS and the less you use your muscles the weaker it momentarily gets and then gets stronger after you use them? If LEMS is even a possibility, you need to know because it can come with cancer risks.

Early on in my diagnostic process, I couldn't figure out why when I walked to an appt. at the University why my arms would be so weak! Yes, even if you are not actively using one muscle group, the others can get weak because the antibody attack isn't too particular which area it attacks. Also, I do suspect that any physical activity kicks up MG and the antibodies. You could be using your legs while your MG is busy attacking the neuromuscular junction of your arms. That's why MG is the most seriously stupid disease on the planet! You can't use your logic to figure it out because it's illogical.

I don't know what to tell you but to investigate all possibilities. But don't make yourself nuts in the process! None of us can know what's going on but so many of us are really trying to help. I hope your doctors can get to the bottom of all of this. Take care.

Annie