I have never had the celiac antibodies done, but I eliminated gluten from my diet for a trial of about seven weeks. I didn't note any differences when I stopped, or when I started eating it again. I know that's not conclusive. I have no digestive problems, which I also know isn't conclusive. I suppose I should have it done. I get my potassium tested regularly because I'm on HCTZ (to prevent migraines that were consuming my life). It was borderline low at one point, but hasn't been since I started taking care to eat potassium-rich foods every day (at lunch--and my episodes of weakness hit around 5:00 p.m.--as far as I can tell, the episodes are totally independent of what I eat and whether I eat). My blood sugar has always been excellent. But I'll talk to my endo about these things.

What makes you think of LEMS?

I asked my neuro about Hizentra, and he said exactly what I predicted he'd say: "I don't have any experience with that." This is frustrating. He's the myasthenia expert in the area. MG is a neurological disease, but many of the treatments are more in a rheumatologist's area of expertise.

I'm holding out hope for the Imuran because I was on a dose that was way too low for most of the year. When I get my bloodwork for toxicity, the lab measures the size of the red blood cells. Evidently if the Imuran is having an effect, they're supposed to be bigger. Mine weren't as of February--that's when I got my last dose increase. Will see if they are now. And you know what, I am better--when I look at the whole picture--better than I was a year ago, and what could account for that but the Imuran? I bet I would find out I was much worse off of it. I'm fortunate that it doesn't give me any side effects that I know of.

Thanks for taking the time to respond. We appreciate what you do here!

Abby

Tatia, I've been reading about the different kinds of periodic paralysis. I never wake up weak, or very rarely. Here's something, though: I often find out I'm weak when I stand up after sitting for a while, at a movie, at a restaurant, or a church. Many's the Sunday I breezed into church on my own two feet but had to be dragged out. All the little old ladies are very concerned about me.

I know you said that it's been documented as starting in very old people, but that seems to be extremely rare. from what I read ("almost without exception, the first attacks begin before age 25"). I'm trying to think back to anything I could have had when I was younger that was an episode. I used to have sleep paralysis: I would be awake and conscious (able to hear things going on around me) but completely unable to move. But I think that was textbook sleep paralysis. If someone touched me, I'd immediately snap out of it. That's sleep paralysis: my mind was awake but my body was still asleep.

Anyway, I got my first noticeable symptoms of what I think is myasthenia at age 42.

I'm going to do some obsessive journaling.

I haven't had an attack for the last few days, but I can feel the normal weakness in my arms and neck. Today (a good day) I had to rest halfway through slicing a loaf of bread, and as I type this I'm slumped back so that I can rest my head on the back of the chair, because my neck's tired. That's normal myasthenia stuff--worse in the evenings. The "episodes" are in addition to that.

Abby

I am unlike others here in that Prednisone makes me feel so much better! I only take low doses and only for short periods, but for me it is like energy in a bottle.

Abby,

Your quote comes from Deb Cavel-Greant's website. Incidentally, she is one of the folks with HKPP who was originally diagnosed with MG. She even authored "You, Me, and Myasthenia Gravis." Her site also says about Hyperkalemic PP: "Symptoms usually develop in the first years of life, but invariably begin by age 20" The gentleman I sat next to at the conference did not get symptoms until he turned 42, and he has been genetically confirmed with HyKPP.

Please don't misunderstand; I'm not trying to push this on you. I even used the words "long shot...." It's just that you asked "What else should I be considering..." Since you've been looking at things like surgery and worms, I just thought I'd mention it in case you wanted to try the meds for a month or two just to see if you might be one of the irregular cases. Take it or leave it as you will, but please don't let your age be a determining factor for you.

It's probably a long shot for me as well, but I'm at the point where I may never get definitive answers and I'm just going to try treatments for similar conditions until I find something that helps or die trying.

Tatia,

You've been very helpful to me. Because of our discussion, I gathered the courage to ask my neurologist to consider ion channelopathies (he's a good doctor, who has never treated me disrespectfully, but I am not over the fear of being pegged a hypochondriac, or having my illness labeled psychosomatic--I'm sure you know what I'm talking about!). He's going to look into it, and talk with his partner.

I also read somewhere--maybe on the same site--that many people with HKPP only have attacks in their sleep and don't even know it, for many years. So, that makes me think it's possible that a patient does start under the age of 24, but doesn't know she has it until she's 43.

I have not had an episode in several days. This is most likely because I'm in the "good" part of my monthly cycle. In fact, I've been feeling quite good--the best I've felt in a couple of years, with the exception of six weeks after a successful course of IVIg. I went (gasp) to the DMV this morning, and took the kids to a (very) nearby lake in the afternoon. Sounds like I"m "normal," right? But when I pumped gas, I could only manage ten gallons before my hands completely gave out. And I hadn't even noticed they were weak. So, there's that: I'm not normal between episodes. I read that neither are people with HKPP--it's just that they're used to the weakness, and think of it as normal, especially against the background of periodic extreme attacks.

I really just meant to say: I greatly appreciate your suggestions, and I'm following through. I have the general impression that there are many diseases that the textbooks say show up in childhood that actually sometimes show up much, much later. CMS is one of them.

Abby