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.

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?

Anacrusis, I started a new thread for you.

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!

Hi, Sara. I remember you. You and I do the collapse slowly and very gracefully into a squatting position thing, right?

I don't get any vibration feelings. If my muscles get weak and I use them anyway, I do feel a very mild tingling in them, sort of like when your foot feels asleep but much milder.

Has your neurologist tested your blood for MG antibodies? If not, I hope he does that today! If he does and the test comes back positive, then you have a diagnosis. If not, you might still have MG. Let us know what he says today.

Abby

Hi Abby,
Yes I am the other sinker! haha
But, No he hasn't tested me for the antibodies. I'm wondering if it's an expensive test. Usually for things like that ( specialized test) they have to be sent away to Toronto to be analysed, so i'm thinking it's expensive.
He wants me to come to get the EMG done.
He says I have significantly improved, which I do think i have from January!!
He's thinking maybe it was viral?

so no news, but I'm glad he thinks I have improved!!

-Sara