Thought I'd share some info i learned from the support group members

MG'ers shouldn't drink through straw ...I may not be right about reason but I think that it is because can lead to aspirating fluids (immediate or over long term) but best to just avoid straws

There are foods we should avoid...don't eat too much magnesium (so my healthy green smoothly each day maybe shouldn't include spinach?)
Anyone know of or want to shared list of foods we shouldn't eat?

Take mestinon with food, at least cracker, even if it doesn't bother your stomach without because over the long term it will.

Again, I strongly encourage attending live support group was well worth the time and 45 minute drive each way!

Stephanie

Just like on the internet, sometimes things in support groups can be "sensationalized" and cause worry where it isn't necessary. The whole "magnesium" issue is one of those things and it comes up every once in a while here.

No, you wouldn't want to drink a bottle of magnesium citrate before a surgical procedure or in case of severe constipation. That would probably make you quite weak. However, a big spinach salad or a peanut butter sandwich or any other food, eaten in normal quantities is likely fine. However, if you find that you consistently "crash" within a couple of hours of having a certain food, of course you should consider testing it out and perhaps eliminating it.

There really aren't any foods that should absolutely be eliminated. I LOVE an occasional gin and tonic. However, I find that they don't love me. The minute amount of quinine leaves me weak for a few days and it isn't worth it. It's happened the 3 out of 3 times I've tried in over the last 10 years. So, I just avoid it. Should everyone with MG? I have no idea, but probably not.

The straw thing is kind of silly, IMO. Unless you are sucking back a drink as fast as you can, I really don't see how that would be a problem, In fact, if you are THAT weak, you probably couldn't suck on a straw in the first place. I've found straws to be useful, especially when arms are weak and the simple act of lifting and tipping a glass up to my mouth is a chore. Again, your milage may vary (even day to day).

There are no absolutes with MG, except maybe that it's a real PITA! Read, listen to others' stories, compare them to your own experiences and go from there!

Good luck!

You got that right!

Actually, I'm VERY bulbar AND a straw is the ONLY way I can drink. I cannot swallow liquids AT all with my head tilted back -- as in raising a glass to your mouth and angling your head back. I can ONLY drink with my chin in a 90° angle (or less) to my neck (I often "tuck" to swallow). A straw is the only way I can manage this. In addition, I can only drink with a skinny straw. My lips are weak and cannot "hold" a thick straw. Sometimes I have to "grip" the straw with my teeth.

I carry straws IN my purse. In a pinch, I can take a sip from a glass and hold it in my mouth until I put my head into the right formation -- but, the liquid will often dribble out of the corners of my mouth (since my lips don't form a seal). Hey, if I'm thirsty enough!!!!

I still have to be very careful when I drink -- I take small sips and pay close attention to how things are going down.

BTW, I have a TERRIBLE time swallowing pills with water. I put the pills in my mouth -- get a small amount of water -- and then the "tossing" begins. I have to toss my head back to get the pill/water mixture to the back of my mouth, near my throat -- then put my chin back at the 90° angle so I can swallow. If the pill/water mixture moves OR if my throat doesn't feel just "right", I have to "toss" again. Sometimes I have to "toss" 20 or more times BEFORE I get my meds down in the morning and again at night. It is EXHAUSTING!! Yep, I've looked into it -- some of my meds do NOT come in liquid form and some of them CANNOT be crushed.

Vey interesting, thanks. I guess as with most things with MG it all depends on your own particular circumstances.

Has anyone found any vitamins/supplements that do help with the MG symptoms?

kathie

My neuro recommended taking Vitamin D. He indicated that most people with MG have low D levels, although I'm not entirely sure if there's a correlation or what the vitamin actually does in regard to treatment of the disease/symptoms.

Here's a study that shows that people with MG tend to have low vitamin D levels, and that supplementation improves MG symptoms:

http://www.ncbi.nlm.nih.gov/pubmed/22672742

Abby

well there you go! thanks for the link Abby!

Thanks for the link, I think I will wait for my neurologist appointment before I start taking vitamin D in case he want to run blood test. I am still waiting 2 months for a neurologist appointment. They tell me I am first on the waiting list for a cancellation when they heard my symptoms.

kathie