Abby, I had to do some thinking about this. Why don't you keep a diary of foods you eat and what you do for a week. See if there is any correlation between those things. If not, you may want to consider this:

http://neuromuscular.wustl.edu/synmg.html

Congenital MG with episodic apnea
l Choline acetyltransferase (ChAT) ; Chromosome 10q11.2; Recessive

or

Weakness + Episodic apnea & Bulbar dysfunction19
l Sodium Channel - α subunit (SCN4A) ; Chromosome 17q35; ? Dominant
SCN4A gene mutation

It could be an electrolyte issue. Who knows. Without testing you when it happens, it'll be hard to say what it is.

Could be MG. You walk, talk and breathe like MG. I'm sure the lack of antibodies haunts you. It did me too until I found out I do have them.

I guess I would say to make sure that you're not out driving or something when this happens. Scary no matter what you're doing. Tell your neuro about it.

Annie

Annie,

Thank you so much for working on this for me. You are really an inspriation to me.

Both of these syndromes you mention have the onset of symptoms in infancy or early childhood. I'm 44 (and have had these symptoms for a year). Also, no apnea.

You're right--I sure would feel a lot better about this whole diagnosis if they could find the antibodies! What's going to happen, I suspect, is that either the Imuran will work, and that will indicate an autoimmune disorder, or it won't and we'll have to rethink all this.

I will start keeping a diary. I will! Right now.

I've had my antibodies tested three times in the past year--always negative. I think they're done testing me...My latest SFEMG established the diagnosis of MG firmly enough that I'm going to start Imuran. As soon as I work out one sticky issue with my doctor (I think I'll spare you guys the details on that one--I do have high hopes that we can work it out soon).

Thanks again. I think that these attacks are the same thing that I have throughout the day. All the symptoms are the same--just more intense.

Abby

Maybe you could try to eat a banana right away. Or an avacado. If it is a potassium issue, you'll get better. When was the last time you had a metabolic panel done?

Dok-7 is a possibility too. Have they tested your CPK?

I hope the Imuran works. Maybe you need to rethink Mestinon. You may not be able to tell if it's working but it might be helping enough to keep these episodes at bay.

Well, I don't feel very inspiring but if you say so.


Annie

I should add that they don't know everything about these damn syndromes. There are over 100 of them and counting. Some show up mild in childhood and don't rear their ugly heads until later in life. Since they often get missed, all of the "documentation" of them goes unnoticed too.

I hereby resolve to eat a banana when I have a weak spell. Can't hurt! And I like bananas.

I am on HCTZ, so I have my potassium checked regularly. It's been a while, but I know I've had it checked since I since I started getting these spells.

A CPK test, yes, that's the first thing they checked when I showed up at the neurologist.

It really does feel like myasthenia--all the same symptoms, just more intensely. What confused the doctors at first is that my main symptom is this weakness in the muscles in my sides. That's evidently atypical as a most severe symptom. But I have more typical MG symptoms, too: weakness in my arms and legs (exhausting to comb my hair, etc.), weakness in my neck, a little bulbar involvement, and some eye stuff.

I wish I knew more about what the neurologist in Boston saw on the SFEMG of my face that made him so confident in the diagnosis--I don't understand too much about what sort of details that test gives. He also said I have Cogan's Lid Twitch, even though I don't have noticeable (to me) ptosis. I'm really proud of that.

Thanks again, Annie.

Abby