I have a cousin who is on immune suppressants for a liver and a kidney transplant. She has to avoid even the mention of a cold -- and with two young grandkids (the LOVES of her life) this is soooooo hard!

Ya know, I have always blamed my "brain fog" (and ongoing stupidity ) on plain ole MG. But, IVIG as a cause makes so much sense! Thanks for saying this!

Mesty is such a benign med -- except for the stomach cramps it can give. I hope they give you a trial SOON!

Jana, What happens if you have a protein shake? Well, besides not being able to swallow it well. Though you can always put oatmeal in it to thicken it up but that would defeat the liquid experiment.

I was wondering if liquid food went down. Due to my lack of stomach acid, I'm on Mestinon Syrup. It's a PITA due to it's size but it absorbs more quickly. I've never even tried the tablets.

I have to tell you that I think the drug companies, via antacids, are making us ill. People get sick from pigging out and then pop an antacid to feel better. But if you don't have enough stomach acid, the whole cycle keeps getting worse. Then you move on to acid blockers. Again, worse. Why would the human body have stomach acid in it if it wasn't good for us? The percentage of people who have too much is like less than 5%. That's not who is targeted for the sale of the antacids/acid blockers. To them, we're just a revenue stream.

You really can't say for sure if this is a acid or motility issue. If food isn't digested in the stomach - which is the main job of the stomach - then you really can't blame that on paresis. If the food coming up is more liquified, then I would think it's paresis. But that doesn't sound like what's going on, especially when it's had 8 or so hours to digest.

If you put a piece of food in a bowl, which literally has complete paresis, and then pour some liquid acid on it, it will eat away at the food. That's what came into my mind and made me still think it's an acid issue. Or the Coca-Cola experiment where it's so corrosive that it "digests" steak.

Okay, I have to ask . . . how's your B12 level? Iron, calcium or protein?

Also, the cabbage family (broccoli, etc.) is notorious for causing huge amounts of gas.

I'm glad you chimed in on this, Rach. I was hoping you would too.

Did your Dad have cancer of the pancreas alone or was it elsewhere? My grandparents had adenocarcinoma that started in the colon and then spread to organs from there. That's a significant difference.

Do you know if you have a hiatal hernia?

http://www.webmd.com/digestive-disorders/hiatal-hernia

Whatever is going on, it's making you miserable. I'm glad you have such a good primary doc to help you.

Annie

http://www.mayoclinic.com/health/dig...system/an00896

http://digestive.niddk.nih.gov/ddiseases/pubs/yrdd/

Hi,

Yeah I still lurk lol! Ive been on more frequently recently as Ive developed swallowing problems that seem to ease with mestinon. I havent bothered to tell any of my Drs as they all insist I dont have MG and because they are actually trying to help me for the first time in years I dont want to rock the boat. Its a sad situation to be in!

I have a wonderful speech therapist who is learning about Ehlers Danlos syndrome with me to try and help the swallowing and strengthen my voice because it goes really sexy after a few minutes of talking lol!

Jana - that wasnt a poor mans tilt table test. How to do it is to lie down in a darkened room for 20 mins and relax. Take your resting heart rate. Then Stand (dont sit just stand) and dont move (your body if you have problems will try and jig around to stop you fainting etc) Take your heart rate at 2 mins, 5 mins, 10 mins, 20 mins. If you can stand for that long. POTS is indicated if your heart rate goes above 120bpm or raises by 30-40 bpm and stays up.

I actually have done the full on test and threw up at the 10min point. Which was fun because I was strapped to a table at the time. The poor nurse had to play catch which was above and beyond the call of duty.

You dont just have to take your heart rate if you have a blood pressure monitor you could use that if it includes HR as well.

Your BP is considered low normal in the UK you have to be below 90/60 to be classed as having a low bp, but the world health authority says 100/60. I basically feel ill if I am below 115/60. I havent had blood pressure that high for years and I will regularly drop to 72/40! What fun.

Im glad you found the info useful

Rach
ps High Annie!

I just got back from the GP -- will post what he said in a new box.

Thanks so much, Rach! This forum is such a good "school" -- I learn so much here!

Such a kind and thorough doc I have. He listened to all of my symptoms and then asked a LOT of questions. He felt and pushed all over my abdomen.

He thinks I might have gall stones! So, I will have an ultrasound early next week. He also did bloodwork -- regular stuff (CBC) and a liver panel.

Ya know, I have NOT hurt under my right breast OR in the upper right quadrant OR near my shoulder blade............so, I had NOT even considered gall stones! I just did a search and a questionaire -- and I "fit" about 90% of the symptoms!! Apparently, gall stones can cause temporary gastroparesis, too.

My grandmother had gall stones.......

Doc is NOT sure, of course. Said he wanted to rule this out BEFORE sending me on to a gastro.

I'm really kind of hoping he's right. Gall stones would be MUCH easier to deal with than NO stomach acid OR chronic gastroparesis, RIGHT?!?!?!?!

So, has anybody had gallstones?? Inquiring minds want to know..........

This will be quick for now, though I have more thoughts.

In my family, gallstones are directly related to not enough stomach acid. You can have no symptoms to a lot of them. My Mom's belching and other symptoms were not alleviated by taking her gall bladder out. Only taking Betaine HCL, 12 years later, made her GI symptoms go away. And she had a low B12 too. Betaine is a very simple solution to no stomach acid as opposed to surgery.

Your low BP could also be a sign of Addisons.

DRAT!! I wanted an "easy" fix for something, ya know?!?!?! Something where I could just do ONE thing.....and not have to take another med for the rest of my life.

Won't they HAVE to do surgery IF I have stones??

Yeah, I thought about the Addisons -- with all of the salt I CRAVE!! But, my skin color is normal. Of course I could be one of the few without discoloration.

Thanks, Annie.

They may be able to take out your gallstones nonsurgically by going down your stomach and into your gallbladder with a scope thing. I was almost sure that I had gallstones, but I didn't. The symptoms went away on their own with no diagnosis.

Thanks, Celeste! As long as I'm "asleep" when they do it!

Were you having these symtoms before or after being dx with MG?