[grandson]

My grandmother was admitted to the hospital and diagnosed with MG earlier this year. It was a close call but thankfully she has been recovering. However, she continues to have pain in her stomach, as though someone is squeezing her. We later figured out that it is actually gas, and because of MG, her esophagus isn't functioning as it should and is causing her a lot of pain.

Has this happened to anyone else here? Does anyone have any recommendations for treatment? We had her using ant-acids but have just switched to more natural remedies and it seems to be happening less frequently. Is there a cure for this though?

She is taking the standard prescriptions that are given for those with MG but it seems that this problem is somewhat uncommon.

She is in extreme pain when she has gas and there HAS to be a solution other than her living this way for the rest of her life.

Thanks,

Concerned Grandson

[AnnieB3]

Hi, grandson. Welcome.

How old is your grandmother?

Has she seen a gastroenterologist? Did they test her for celiac disease? Does she become sicker after eating gluten foods (wheat, barley, rye, or oats)?

Did they test her for H. Pylori (a bacteria)?

It might possibly be MG, but doctors tend to chalk all symptoms up to the one disease someone has.

It might not only be the slow motility of her esophagus. She might also have not enough stomach acid. Just as our skin wrinkles and our hair goes gray as we age, the stomach ages, too. When there isn't enough stomach acid, food sits in the stomach for a longer period of time, causing distress. It can then dump into the small intestines, causing what's called "dumping syndrome."

If the food isn't digested properly, it can cause all sorts of GI problems. It can also cause reactive hypoglycemia, where a person is hungry about an hour after eating and their glucose also drops.

Undigested food can putrefy in the GI tract, causing all sorts of issues such as bloating, gas, leaky gut, increased infections and allergies, etc.

If she doesn't have enough stomach acid, antacids will make the problem worse. Gastritis can also be caused by a lack of acid.

Has she been tested for a B12 or D deficiency? Is she low on iron, albumin, or calcium? Those are signs of low stomach acid.

I don't have stomach acid and I take Betaine HCL with my meals to help digest them. It's a mild acid made from sugar beets which helps to digest food. I've been taking it since 1999 and never had GI problems since (except for the celiac disease in 2004).

What MG drugs is she on? Might they be contributing to the problem? Is she on Prednisone? Prednisone reduces the gel coating of the stomach because it's an anti-prostaglandin. Good prostaglandin foods such as fish, walnuts, and other omega 3's can help maintain a healthy coating.

A good primary doctor or a good gastroenterologist would do a thorough evaluation.

What "natural remedies" are you trying? Be cautious of using anything without running it by a doctor and a pharmacist to check for any interactions with whatever meds she is on.

You can also help by getting any test results/records. How did doctors "prove" that her stomach issues were from MG? I'll bet they didn't, but assumed it was.

Is there anything else we can help with?

I had that same pain/gastritis before both my B12 deficiency and a lack of acid (which caused the deficiency) was diagnosed. Antacids did nothing.

I hope you can find a doctor or two to help your grandmother!

Annie

[grandson]

Originally Posted by AnnieB3

Hi, grandson. Welcome.

How old is your grandmother?

Has she seen a gastroenterologist? Did they test her for celiac disease? Does she become sicker after eating gluten foods (wheat, barley, rye, or oats)?

Did they test her for H. Pylori (a bacteria)?

It might possibly be MG, but doctors tend to chalk all symptoms up to the one disease someone has.

It might not only be the slow motility of her esophagus. She might also have not enough stomach acid. Just as our skin wrinkles and our hair goes gray as we age, the stomach ages, too. When there isn't enough stomach acid, food sits in the stomach for a longer period of time, causing distress. It can then dump into the small intestines, causing what's called "dumping syndrome."

If the food isn't digested properly, it can cause all sorts of GI problems. It can also cause reactive hypoglycemia, where a person is hungry about an hour after eating and their glucose also drops.

Undigested food can putrefy in the GI tract, causing all sorts of issues such as bloating, gas, leaky gut, increased infections and allergies, etc.

If she doesn't have enough stomach acid, antacids will make the problem worse. Gastritis can also be caused by a lack of acid.

Has she been tested for a B12 or D deficiency? Is she low on iron, albumin, or calcium? Those are signs of low stomach acid.

I don't have stomach acid and I take Betaine HCL with my meals to help digest them. It's a mild acid made from sugar beets which helps to digest food. I've been taking it since 1999 and never had GI problems since (except for the celiac disease in 2004).

What MG drugs is she on? Might they be contributing to the problem? Is she on Prednisone? Prednisone reduces the gel coating of the stomach because it's an anti-prostaglandin. Good prostaglandin foods such as fish, walnuts, and other omega 3's can help maintain a healthy coating.

A good primary doctor or a good gastroenterologist would do a thorough evaluation.

What "natural remedies" are you trying? Be cautious of using anything without running it by a doctor and a pharmacist to check for any interactions with whatever meds she is on.

You can also help by getting any test results/records. How did doctors "prove" that her stomach issues were from MG? I'll bet they didn't, but assumed it was.

Is there anything else we can help with?

I had that same pain/gastritis before both my B12 deficiency and a lack of acid (which caused the deficiency) was diagnosed. Antacids did nothing.

I hope you can find a doctor or two to help your grandmother!

Annie

Thank you so much for the swift response, Annie.

I will definitely look into those things. My mother handles my grandmother's health records and I will provide more specific information for you tomorrow.

We live in South Florida and have been extremely disappointed with how patients are treated here, previously living the North Jersey/New York area.
In the beginning we weren't sure what exactly the problem was until I pointed out to the doctor that every time she burps (enough times) the pain subsides.

I am really intrigued by your suggestion that it could be a B12 deficiency and a lack of acid problem. That has never been mentioned in any discussion and is definitely something I will speak to the doctor about.

Thanks again.

-----

grandson

[AnnieB3]

I'm not surprised B12 and hypochlorhydria/achlorhydria (low and now stomach acid) haven't been mentioned. There's no profit in it for the drug companies!

Does your grandmother have any fatigue issues or numbness/tingling in her face, feet, and/or hands?

Dr. Allan Weiss is at the St. Anthony's Neurology Group and is a MG expert and MDA Director. Dr. Franklin is his colleague and is great, too.

http://mda.org/clinic/st-anthonys-neurology-group

He might be able to refer your grandmother to an internist and a gastroenterologist, too.

There are good doctors out there, but sometimes it takes a bit of digging. Anyone else have some suggestions?

My mom burped for years. Doctors thought that having her gall bladder out would stop it. Only the Betaine HCL she started taking TWELVE YEARS later did, after I prompted her to try it and be tested for a B12 deficiency. She had a low B12 (still in the normal range) and paresthesias in her hands and feet, which stopped a few months after taking methylcobalamin (superior form of B12). So a body can still be deficient while the B12 level is in the normal range! I personally take Jarrow Formula methylcobalamin twice a day (5 mg. tablets). So does my mom.

Annie

[grandson]

Thanks for the resource!

Other issues that she has and which we assumed was a direct result of MG is a very strong feeling of heaviness, tightness on her stomach and chest area, and a constant pain in her right arm. She also sometimes has the feeling of tremors throughout her body, even more so when she is laying down.

Fatigue isn't something we are really worried about since she is 82 years old and are focussing more so on her discomfort.

I can't wait for tomorrow because I plan on going straight to the pharmacy to pick up some Betaine HCL!

-----

grandson

[AnnieB3]

Fatigue is an issue if it's from a B12 deficiency! Without B12, a person can die. Slowly, but it's essential for every cell in the body. No small problem. It should be tested for right away.

You really need to consult with a physician BEFORE she starts Betaine HCL!

And there are Internet sources for B12 and Betaine that are far cheaper than a local store (unfortunately).

Has she had a full cardiac workup? MG can affect the heart and brain, if she has hypoxemia (lack of oxygen). Have they done an overnight sleep study or oximetry (while she's sleeping)? Muscles become weaker when we sleep and she might have hypoxemia while she's sleeping. Not good.

Please consult someone first before proceeding with any OTCs. At least a conversation. Betaine HCL is fairly benign but no one can say for sure if it's okay to try except her doctors!

Annie