Does anyone notice that their symptoms are worse when they're hungry? My worst time of day is typically from 4-5 p.m., and then again at bedtime (around 10 or 11). I eat lunch at noon and dinner at 5. It occurs to me that both of these times are when I haven't eaten for 4 or 5 hours.

Then again, I'm usually almost normal in the morning, when my blood sugar must be lowest, so that doesn't fit.

I'm going to experiment a bit (smaller more frequent meals, which is usually a good idea anyway, right?). But I'm wondering whether anyone else has noticed a connection. It may just be a coincidence--late afternoons are typical tired times.

Abby

I noticed something similar, getting weak between meals. I also get an increase in my symptoms if I eat a big meal. The solution that works best for me is to eat a handful of nuts, seeds and a fruit between meals if I feel weak. I think my weakness is nutritional related since not all foods make this weakness better.

I have also started taking the B-12 recommended by Annie, the Jarrow brand with Methyl B-12 and I am seeing a difference in the way I feel. I have fewer afternoons with weakness. I can feel the difference between this B-12 and the other brands I have tried. It has also extended my daytime awake time by approximately 3 hrs! I am wondering what the safe limits for this vitamin is. I started out taking 1 tablet (1000 mcg) every 3 days, then increased it to one every day. I have taken two a day on days when I feel tired and found that the B-12 makes me feel better within an hour or two.

(Thanks Annie!)

Abby, I sure do notice a distinct change in muscle strength on those rare occasions when my blood sugar drops. It's no coincidence. This is a really good article to explain all that:

http://www.altmd.com/Articles/Hypogl...ative-Medicine

This is an extreme example, for people with glycogen storage disease:

http://www.agsdus.org/html/typeivongierke.htm

Before I found out that I didn't have stomach acid and started taking Betaine HCL, I was having reactive hypoglycemia. My food didn't get properly digested and was dumping into my small intestines. Not a fun thing to have. I've had a glucose monitor ever since. I still tend to have drops in my glucose from time to time.

Do you eat breakfast? If not, you should start! I do the "grazing" thing throughout the day. I concentrate on carbo/protein combinations, which is a bit harder when you have celiac disease!

Abby, Have you ever read through this site? Are you sure you don't have some congenital myasthenic syndrome. Some syndromes are late onset.

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

Susan, I'm glad that is working for you. B12 is one of those vitamins where you can't really get too much, unless you're being nutty and having like ten bottles at a time. In that case, the body will simply pee it out. Mrs. D could back this up or you could go to the gluten forum here and get lots of info!

I take 5 mg. of B12 twice a day. More if my feet/ankles or lower back are flaring. I didn't get sufficient treatment soon enough after my deficiency and I have found that I can't miss my B12 or those areas "flare." They were the worst during my def.

Sublingual B12 goes to work in the blood stream, as you know. Some of it is used by the body, some is stored in the liver and the rest is peed out.

You need B12 to make acetylcholine. It was during my B12 def. that my symptoms of weakness came to light (after 40 years of having them).

Abby, I don't believe in coincidences. Cause and effect? Yes. Instincts? Yes. But things just don't happen in the body for no reason. Too bad some doctors don't "think" that way. They might solve more problems if they were open to their patients' instincts.

Hope you guys are doing well.

Annie

Annie,

A few years ago, I used to get dizzy and nauseous in the late morning, so now I make sure to have protein and not just carbs for breakfast, and that seems to solve the problem. I think that dizzy, nauseous feeling was low blood sugar from reactive hypoglycemia. But now, around four o'clock, when I hit my "tilty" time (weak side muscles), I am usually quite hungry, but I don't have that shaky, nauseous, dizzy feeling.

These past couple of days I've been not letting myself get hungry, and making sure to keep some protein in me, and it hasn't helped at all. In fact, I've been tiltier than usual.

I am 45, and these symptoms started last fall. Wouldn't it be almost impossible for a congenital syndrome to start so late? I've looked into glycogen storage diseases and such... I dunno...none of the symptoms sound like me. I also tested normal for--can't remember the name of the test--the enzyme that shows your muscles are breaking down. I have seven healthy siblings, too, so the chances of something genetic, especially dominant are lower.

Thanks again, Annie, for all your trouble. I am constantly learning--collecting information. One of these days something's going to click.

Abby

I'm wondering, if you take Mestinon, does that get rid of the "hunger" feeling?

Have you ever had a brain MRI? Had any cardiac workup? Just throwing thoughts out there.

You never know when something might click or bring on another thought. That's why I don't mind looking stupid bringing things up. The creative process involves throwing stuff out there and then sifting through it to find the "art." I wish more doctors could do that.

Oh, creatinine phosphokinase is what you are talking about, I think. Or did they do lactate and pyruvate too?

Annie

Annie,

I'm a huge fan of "throwing thoughts out!" I agree: that's how things get done. I don't intend to stop until I get a diagnosis, and I'm mighty grateful for your help.

I had a brain MRI first thing last fall, and neck, too. Also a CT-scan when I went to the ER once, after a particularly scary day and before anyone brought up MG. All normal.

I finished losing 50 pounds a year and a half ago, and I've been counting calories every since to maintain the loss. I'm by no means underweight! In fact, I'm just barely in the "not overweight" category for my height--BMI 24.9, that's me. But my daily calorie limit leaves me hungry for an hour before mealtimes, even when I'm careful about whole grains, protein/carb balance, etc. So it's no mystery why I'm hungry at 4:00...I do take my Mestinon around then (lucky me--I can take that stuff on an empty stomach with no problems).

Yes, creatinine phosphokinase is what I meant. My neuro thinks that between my normal CP levels and my normal EMG (it was only the SFEMG that was mildly abnormal) a lot of things are ruled out, like any kind of muscular dystrophy.

Cardiac...I don't know. My cholesterol and lipids are excellent (I'm an ovo-lacto vegetarian--and yes, I had my B12 checked!). I used to have an arhythmia so I had an echo a few years ago, which was normal, and I haven't had the arhythmia problem for a long time.

Thanks for your thoughts. I'm actually fascinated by this kind of thing, even when it doesn't have personal ramifications. My best guess right now is that I have atypical MG, but I'm not ruling out other diagnoses. I sort of want to ask my doctor: if no one tries to diagnose patients who present with symptoms that aren't typical of a known disease, then how do new diseases get discovered? I see him again in October.

Abby