Myasthenia Gravis Support Group

Is this new for you, or have you had chewing/swallowing problems before? How long have you had MG?

I am SO sorry that you are going through this!!! I have not had that problem since my diagnosis, and I pray that I will not have to go through it either, I have every other problem there is, and high anxiety to go with it!! I PRAY that things get better for you and that someone in the MG communtiy has an answer for you.
I am sorry that I can not help you on this, but just remember you will be OKay and things will get better!! Hang in There, were here for ya!!
Kim :)

Is tongue swelling an MG symptom? I know it's a common and dangerous allergic reaction symptom. Is it possible you are eating something you are allergic to? Sarah

Tongue swelling can indeed be a sympton of MG due to the fact that if you over work the muscles you never know what the consequences will be from that but like Sarah100 said you should look into the notion that you can be eating something that you are allergic to from the seasoning you use in your food or the food itself.. I pray that eveyrthing works out for you and I wish you the best in the future..

Tootles :)

Hi rv6a - My husband has MG and experienced this issue. In fact it was the thing that lead me to take him to the ER where he was first diagnosed with MG. It is not so much swelling as it is the fact the tongue is all muscle and one of the strongest muscles in your body. The muscle is all tired out so it is not in it's normal cooperative form. Keep track of this very carefully and if it does not get better soon, call and get into your neuro doc or go to emergency. When my husband had this issue it was only a matter of days until it led into MG Crisis. When your tongue is so tired it's not working this is just a symptom showing how much your neuromuscular junctions are be attacked by your body at that point in time and how little your muscles are functioning because of that attack. I'm not a doctor but I've researched a ton over the last two years and I know if my husband ever shows these symptoms again and they don't go away and stay away within a hour or so I will have him in the ER in no time. You need to get rest and you may need a boost like IVIG or steroids and if you take mestinon you may need to adjust your mestinon dosage levels up before eating. Take care! df

Hi rv6a,

I was just diagnosed at the begininng of the month. Prior to that I went 6 months undiagnosed and yes, I did have tongue swelling. I did not have problem's swallowing but there are two important/ugent issues regarding swallowing...
1. If you are on Mestinon and cannot swallow it, put it under your tongue, once the effects take hold (rather quickly when injesting this way) you should be able to swallow what is left and have an easier time in general.
2. If you are not able to alleviate the swelling you need to call your doctor. The two signs of a Myasthenic Crisis are difficulty breathing and difficulty swallowing. It is imperitive that the hospital knows of your condition so they are able to assess whether you are having a cholernigenic crisis (too much Mestinon) or a Myasthenic Crisis (which can happen to any of us regardless of treatment).

I wish you the best of luck and keep us posted.

rv6a,
I went to a MG meeting this past Sunday a women actually said something interesting about what she does that helps her swallow. She said to try and swallow some ice water before you eat and see if it helps you swallow your food. anything really cold before you try to eat anything..Popsicles ect. Give it a shot and let me know how you make out!!
GOOD LUCK
Dawn

I have that problems sometimes now. What helps me is drink cold water to help move the food down and also cust your food up in small portions so it isn't as much work to chew the food.

My thoughts & prayers are with you! This is exactly how I was dx with MG. I thought my tounge was swelling due to allergic reactions, but when I was tested by my allergist he told me it's not allergies & reffered me to my neuro. They ran all the tests & found I have MG in early 2007. Mestinon & prednisone have helped, but last month it wasn't enough. I got to the point where all I could do was swallow thinner liquids. I was living on water, oj, & chocolate soymilk. So much so that I was hospitalized for 5 days getting IVIG treatments (which have helped tremendously). If your issues continue PLEASE get to your doc ASAP! I have lost 20lbs due to my swallowing problems and feel for anyone who is going through it! There are options out there & if you ask your doc I'm sure they will be able to find something that will work for you. Keep us posted & good luck!
-Taun

Thanks to all of you for your responses to the tongue swelling. I am the wife of rv6a. Just to update all of you, we ended up in the ER and are at present going through a MG crisis. He is having the plasma transfer thing and they have put him on predisone. The docs say he is responding to treatments and assure us that they will bring him through to a better day. So...just a word of advice to those who are new to this disease and we are. Don't put off severe symptoms going on with this disease. Get to a doc that knows about this disease and take care of yourself to avoid this awful crisis. Above all get a doctor who is a specialist in this disease. It makes all the difference in the world. My thoughts and prayers all will all our family of MG'ers Good days and bad days, let's all treasure the good days and be patient and positive through the bad ones.

rv6a and family we are praying for strength to return to your muscles and for the docs to have wisdom to know what treatment will help you most at this time! Also for family and friends to love on you generously and care for your needs willingly! God Bless You All!