Hi rwclark, and welcome to our community. You will find many knowledgeable, and caring people here. Symptoms of the mouth, tongue, and throat are known as,"bulbar symptoms." In many cases these are, along with double vision, and ptosis among the first symptoms to be experienced by MGers. In a minority of cases MG does not progress much beyond these initial complaints, but in most cases MG becomes generalized to some extent, or another. Some of our dear members have refractory cases and need a great deal of care to get by. Others need less intensive treatments and live with an acceptable level of impairment, taking immunosuppressants, and a cholinesterase inhibitor, as you are now doing. Are you AchR positive?

Welcome to the group!
Although I had chewing problems, it was part of general MG. I started with just eyes, then went to chewing and talking problems and then to general MG all in a few weeks from my first obvious symptoms (double vision and drooping eyelid).
Good Luck
Russ

You may notice that the first responses you got were from men. I read once that late in life bulbar onset is most common among men. I was reading about bulbar because that was my onset with general after that - although not really ever ptosis. Before I started the mestinon I had to invert a spoon and scrape the back of my tongue where food would get stuck. I also got much relief from seeing chewing and swallowing specialists. (Two different doctors' specialties - go figure!)

I was told it effects us all differently.
Mine hit my neck a lot in the beginning as well as swallowing.
That seemed to be the symptom that showed its face a lot.
I drank shakes and ate soft foods so I wouldn't get too weak in that area.

Thanks to all of you for the response to my post. Happyguy I don't know what Ach positive is. I haven't been told that I can remember. I have found that fatigue is my enemy. I over did it and ended up in the hospital a few weeks ago we had to be intubated and almost died. I feel with my type when I read about others who have it worse. Right now I am doing pretty good. Changing my life stile which is a difficult. It's good to have this support group....thanks.

Glad you recognized what caused your crisis! It's hard to slow down sometimes!but better safe than sorry! ! Hope the sun is shining for you all today!

Thanks to all of you for the response to my post. Happyguy I don't know what AchR positive is. I haven't been told that I can remember. I have found that fatigue is my enemy. I over did it and ended up in the hospital a few weeks ago we had to be intubated and almost died. I feel with my type when I read about others who have it worse. Right now I am doing pretty good. Changing my life stile which is a difficult. It's good to have this support group....thanks.

AchR ... he's referring to a blood test for something called "acetycholine" ... altho not sure I'm spelling it right. It's one of the tests for MG, although my understanding is that you can have MG with the test coming back negative.

Congrats on getting past that crisis and on into a new, managed routine.

Yes I did have that test and it was positive. Old man and can't remember names of things anymore.lol Thanks

Hello! Welcome! My symptoms started with chewing and swallowing also. I got the flu in February, and that's when my arms and legs also were effected. It's a crazy disease! Hope that your neuro can find the right combination of meds for you!

I had the same. Choked on swallowing water it got so bad.

Remember to time your mestinon when you eat and are going to be drinking more. Take your mestinon a little over an hour before you plan on eating, We need to do things when we are stronger until we are stable.

TJ from CA

First of all welcpome! The beauty of this site is that each person can share their experiences and solutions and that is golden information. I have been away for a while but when I come back it is like slipping into comfortable slippers.

My late husband used to say two heads are better then one and this site due to all the people sharing information is ike having many heads.....lots of experiences to share. Like so many here have said before, we are like snowflakes, each a bit different in how we are effected but this site gives us a place to share and pick what is applicable to us.

I have swallowing difficulties along with ptoses and general arm and leg weakness. I went through some esophageal studies and my doctor ordered swallowing therapy. I also needed some speech therapy. Both have been helpful. I have altered my diet to get rid of things that make me choke more like lettuce and rice and certain types of bread. I find a thicker liquid like smoothy consistency works well for me and is less tiring to "eat/drink" and often make a protein drink with dry protein powder. and blueberries and apples plus Greek yogurt and ice. I eat slowly, keep my chin tucked downward, sip water between bites which all help.

I had to tell friends a few years back, no more long phone calls particularly in the evening when I am more fatigued. My voice only lasts so long. Likewise I modify my schedule so I do more physical things in the mornings when I have more energy.

What I find odd but have accepted is that anything that uses muscles for an extended period of time can result in general increased fatigue for me. An eye test that took three hours and in which they had to tape my eyelids open for me to complete resulted in leg fatigue and I could not drive afterwards until I had time to recoup and take more pyridostigmine. This even tho I took my meds on time and just before the test.

What holds me in the best stead is information and the willingness to make accommodations. It is important that you share with your doctor what is difficult so that if there is something they can help with this can be done. For me the swallow and speech therapy was helpful and the exercises given helped me although with any program like that they need to know that fatigue happens with repitition and exercises need to be done more frequently but in smaller mini sessions. At least that is what I have found.

Hope some of this is helpful to you! Again welcome to the group.

When I started having food issues, I had to give up some things. Like meat,salad raw veggies and some fruits. Remember to cut things up small and avoid the things that require alot of chewing. I drink cold drinks (don't like coffee or tea) that seems to help. Take care

Thanks GreenMarie and Xmas25. The dr raised my predisone to fourty mg and the mestinon to 180 mg four time a day at an hour before I eat. I also because of my chewing and swallowing problem I am going in today and have five more plasmapherisis every other day. This is the third time I have had this. It seems to work for awhile. I have had IVIG but break out in a rash.
I also watch what I eat. Some things I put into the blender and then drink it or at least less chewing. Fatigue at the end of the day is bad and it doesn't take much to get there. I try to lay down for a rest or nap in the afternoon and that helps.
I really like this site. Finding people with the same problems can be very helpful. One of my fears is catching some illness and what it might do to me. I all ready had to be put on a ventilater for three days and don't want to go though that again. Sorry about the spelling as that was not my best class.
Thanks again for the input and hugs to you all. Enjoy the day

How have you liked Plasmerphesis? I've had IVIG without it helping too much. Hopefully the up in meds is going to help get your symptoms under control. I too am grateful for this site. Such a wealth of information!!