Yes, this is Abby doubting her diagnosis again... Because I'm seronegative, and because one doctor couldn't find evidence on the SFEMG, and because I have no eye symptoms. And becaus mestinon doesn't seem to help me at all.

What brought these doubts on is that yesterday I had an episode of intense weakness. I fell twice (the "slow collapse" kind of fall, where my legs just don't hold me up). These episodes come on me quite suddenly and intensely, and they don't seem to be related to my level of activity. I have general weakness through the day, too, and muscle fatiguablitiy. But these episodes, which I've had before, come over me all at once. I can feel the strength draining from my body.

So: how about HKPP! AnnieB6 mentioned this to me once, I think, a while ago. HKPP http://www.hkpp.org/faq/hypokalemic_...paralysis.html comes as attacks, but there are also "abortive attacks" which causes fluctuating daily weakness.

So, how am I supposed to tell MG and HKPP apart? I did have a response to my IVIG treatment--but perhaps that was a coincidence. I had only a week and a half of strength, about two weeks after the IVIG ended.

Abby

I have HypoKPP and MG was something I was tested for on the way to my diagnosis.

Diagnosis for this is extremely difficult. Do carbs or rest after activity seem to trigger attacks?

I'm sorry, I know there was something else I wanted to say to you but I can't remember what it was.

You could see if your doctor is willing to try you on meds for HypoKPP to see if they help.

I often get really weak all at once around 5:00. It's typical for me to be feeling somewhat weak but be functioning, to sit down to dinner, and then to have trouble walking when I leave the table. So, that would sound like a carb reaction and/or a rest after activity reaction--but then I notice it happens at the same time if we haven't eaten yet.

I almost never wake up weak, though.

If you think of anything else, let me know! Thanks for your response.

Abby

Evenings tend to be worst for me. I find that I have been having attacks in the middle of the night while I'm still sleeping. My husband notices a difference in my breathing, that's how we know they happen.

Salt also tends to be a trigger, and so does heat!

Darn it, again I had more to say but can't remember!

I'll let you know when I think of it!
Kristie

Hey, Abby, AnnieB6 here.

http://neuromuscular.wustl.edu/mtime/mepisodic.html

Since you have a very good endocrinologist, why don't you have her put in standing lab orders for a comprehensive chem panel to be done for when you are having these "attacks?" You not only need to see what is going on with your potassium but other electrolytes, glucose, protein, kidney function, etc. Often what doctors can do is put standing orders at a hospital lab, so you can go in anytime of night or day.

A drop in glucose can cause weakness too. Do you have any signs of "reactive hypoglycemia?"

Annie

Aniie,

Oops. I have trouble with numbers, but I never forget a name.

I see my endo Tuesday for a Graves check-up. I'll ask him! Thanks. I'm not sure if I can catch an episode, though, because they often pass pretty quickly...and in the middle of one, getting to the lab is going to be an adventure! But it seems like the thing to do.

I think I know how reactive hypoglycemia feels to me. I used to get sick and shaky mid-morning if I ate only carbs and no protein for breakfast. These episodes feel a lot different--they're an intensification of my usualy myasthenic symptoms, which means trouble holding my body upright, and sometimes my legs don't hold me up either, and I collapse.

Abby

You know what, I'm starting to feel silly for even thinking about this. First of all, I have seven grown siblings--none of them have any weird symptoms. This is a dominant gene. Even if I'm a new mutation, which I've read happens "occasionally," I have seven kids of my own--five of them old enough to show symptoms if they inherited it. And third, I started to get these symptoms when I was 43, which is way too late--almost unheard of.

I will journal the attacks, because maybe there is a trigger, no matter what sort of attacks they are. But I think for now I have to assume it's MG. I'm putting a lot of trust in the occular MG specialist who diagnosed me by SFEMG. Onward and upward. Thanks, Annie and Kristie, for your help, and Kristie, I would still be very interested in anything else you think of!

Abby

I think a journal is an excellent idea!

Include what you eat at each meal too...there may be a trigger in your food.

Also if you could devote 2-5 days to this it was helpful to my doctor. Journal everything you eat or drink, every symptom you have and if you can get a glucose monitor. Check you blood sugar before eating, immediately after, 30 minutes after, 1 hour after and 2 hours after. It is very time consuming to do this, but it was a big help in my diagnosis.

I have an abnormal case. I am the only one in my family with it. My attacks come as full body paralysis including facial muscles and breathing becomes difficult.

I guess I'll just keep trying to tell you what I remember, hopefully I will be able to remember by the time I am typing next time.

How old were you when you started to get symptoms? And do you experience symptoms in between attacks?

Abby