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

Thank you for this. I've been trying to figure out how it was possible for my arms to be weak while walking and this is probably the best explanation I've heard so far.

Anacrusis, I started a new thread for you.

Oi oi oi, I've been all over the place. What's going on is that I'm considering having a thymectomy (and my neuro said, if we're going to do this we should do it soon). Before I do something so invasive and perhaps dangerous, I want to set some other possibilities to rest. It's one thing to be "mostly sure" I have MG if I'm treating it conservatively; but surgery requires a higher level of confidence.

My symptoms are changing. Something new is coming into focus, which is this thing about episodes. They didn't stand out before, but they do now. So the channelopathy idea (HKPP is a channelopathy, right?) fits better now than it did before. I used to stumble around all day, and sometimes get rather worse. Now I walk completely normally--you wouldn't be able to tell anything was wrong--except when I can't walk at all. I can go from one state to another in the space of ten minutes.

Thanks, as always, for your helpfulness.

Abby

Abby, Yes, HKPP is a C. So can epilepsy be. Hmmmm.....

Here are a few articles. There weren't so many years ago but this area has sort of turned a "light" on in scientists brains. It's about time.

www.ohsu.edu/nod/documents/2007/Hanna%202006.pdf

dels-old.nas.edu/USNC-IBRO-USCRC/resources/noebels.pdf

This was a good "history" of the little ion devils.

http://brain.oxfordjournals.org/cont...5/12/2788.full

And I simply find this "interesting," since a friend of mine died of ALS.

http://www.cell.com/neuron/abstract/...273(10)00620-3

So maybe all the pieces do fit nicely into a channelopathy. If so, you're right - anesthesia could be dangerous.

I wish everyone could focus on HEALTH from birth, including ridding our planet of toxins, deciding that bad food IS bad food and shouldn't be given to kids and so many other things that are good for us being taught when we're young like meditation. The power of "energy" to heal is truly amazing.

I hope you find answers. You may need a 2nd opinion again from a channel expert.

Annie

Thanks, Annie. I think that if my neurologist decides it's worth looking into, he'll send me to someone, even if I have to travel. I appreciate the links. By nature I'm an information-gatherer (there's a touch of Asperger's in my family), and I find this stuff fascinating even if it ends up not to have anything to do with my condition.

Abby

Hi Annie,

A basic question:
I used to have this all the time. Does that mean that those with negative blood tests have different antibodies that don´t respond to the standard blood tests? Or is their ´transferrable´weakness caused by some other type of process?

Hi Abby,

I don't know if you remember me, but I was chatting to you earlyer this year.
I have just read this post and I am going through this EXACT same thing. It seems like sitting is making me weak. My neurologist still cannot figure this out. He said he has seen this in a lot of young people lately and it's just going to go away.. I'm not so sure... i keep asking him if it's a disk thing.. he says no

My legs got better and now are getting worse again. I've done physio and she told me to get another opinion.

I am still waiting for my EMG which is in August.
I am going to neuro this afternoon!
I also get full body or leg vibroations which last for hours.. do you experience this? it seems you and I are having very similar symptoms.

Goodluck, Thinking of you and wishing you well,

-Sara
p.s going to neuro now no time for spell check! lol!