Hello All. Been away a long time. I am a retired colonel diagnosed with MG in 2006. I have used Mestinon and Imuran for most of the past seven years. Anyway, starting about six months ago I have serious swallowing problems and have to wash down each bite of food with a drink. I went to a specialist who doesn't think the problem stems from MG, but rather acid in the digestive system. The medicine she prescribed does not help a bit so I am still wondering if MG has a hand in this.

I would see your MG doctor as soon as possible. Are you also having problem with liquids too? I have MG and my swallowing problems come and go. My MG doctor takes them very seriously.

Please see your MG doctor. I find I choke on meat and carbs the most as well as things too liquidy. I do better on fish and caserole type meals where the meat, veggies, noodle or potatoes are over cooked to tender and mushy. That is what works best for me.

I also take my mestinon with a small snack and eat my big meal after the mestinon kicks in.

Let us know what the MG doctor says.
Good Luck
Kathie

This is a long shot, but I read that people with MG (and other autoimmune diseases) sometimes develop Sjogren's syndrome, which causes dry eyes and a dry mouth. People with Sjogren's don't produce enough saliva, and they often have to take a sip of water to help them swallow each bite. Is it possible that's what's going on? Like I say, this is a long shot. Certainly MG on its own can cause swallowing problems when it weakens the muscles you use to swallow.

Abby

Do you even have probs with your digestive system? Bloated feeling, sharp pains (especially left above your navel or up and down your oesophagus), nausea? Pain in your stomach when you lay down? Sores / ulcers in your mouth?
Becasuse it's very easy to just say, this is your digestive system. It's something soooo common (plus the imuran gives you more acid). And easy peasy, just give them 3 months omeprazole and you're done.

What is the reason you need to drink while you eat? Will you choke if you don't? Will it just hang there uncomfortabally, will it go through your nose?
Do you have any other weakness, like chewing or laughing?

Of course it's very possible it's your digestive system, but swallowing problems when you have MG is definitly something they need to take a look at.

When did you start your stomach meds? Because they do not work immediatly if you have an ulcer, this can take weeks, sometimes even months.

Anyway, I find Abby's thoughts something to consider also!

It's really nice to hear from you again!

Well, acid in the stomach doesn't help you swallow food through your throat! And it doesn't impede that either, even if you have too much acid. Too much acid is RARE, BTW, and it's often not enough that's the problem.

A neurologist isn't a gastroenterologist. You should see a gastro if you think the problem is more GI related instead of MG related. Or is that the specialist you saw? Is your neuro doing anything more for you like trying IVIG to see if it gets better? To me, it sounds more like an MG issue but it could be another medical problem making MG worse too.

Have you ever had a brain scan?

I hope you can figure out exactly what is causing it! And don't forget to check with your primary doctor in case they have any brilliant ideas. Often it's the generalists who can see the entire body better and figure out exactly what's going on.

I hope you'll get some relief soon.

Annie

you need to make an appointment with a good neuro. Swallowing issues caused my phemonia which caused my lungs to collapse. Either an IVIG or a plasma exchange with aid in your swallowing issues. For me it took 5 treatments of both before I passed the swallowing test. Its scary when you cant swallow because you can't get your medication down. Remember, tuck your chin down and relax. Swallow. Thats what they told me, because If I ever have this again I need to come in for another plasma. Seek help before things become too chaotic. Okay. I will pray that you get better.