Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I am 28 years old and currently have a MG workup in process. Only lab I have had done was the acetylcholine receptor binding antibody which was negative. My symptoms are neck and chest muscle weakness and difficulty swallowing. The swallowing is an everyday struggle, sometimes I can and other times I can’t. I had difficulty swallowing for 2 years, since giving birth, and honestly I thought i was crazy. It felt like my throat was going numb when I would eat and i thought maybe i was reacting to food. Now I realize it was my throat going weak. I don’t have any weakness in my stems or legs. My head feels so heavy at times that i have to lay down. All the bed rest has started complications with my heart. My neurologist started me on mestinon 60mg TID but I was only able to take once a day due to bradycardia. I didn’t really notice a difference when taking the mestinon but I’m not sure if that’s because I didn’t take it as ordered. I had an RNS test which was normal, not sure if that’s because I have no weakness in my arms. Anyways I’m freaking out going back and forth on what I could have. MG makes sense but my neurologist doesn’t seem to have a sense of urgency to find out, she has me seeing every specialist in the mean time. I was in the hospital last week before I ever tried mestinon which difficulty keeping my head up and swallowing. I thought I was going to stop breathing. I’ve had every scan possible and all are negative. Any input is appreciated. I feel super alone and with bed rest there’s only time to think
It is good your doctor has you going to several different specialists to see if they can help figure it out. Definitely you should see a specialist in digestive diseases (GI) for the swallowing problems. There are tests that can determine if it is muscle problems, nerve problems or whatever else can be wrong.
Have you had your thyroid levels checked--sometimes that is related to swallowing problems as well as tiredness. I had that first before later having MG added.
Hang in there and let the specialists figure out what is wrong or at least rule out all of the things you don't have. MG is rather odd in that for most of us, the muscles work OK for the first few times, but tire early. So with me, I could chew for a minute or two and swallow OK, and then had to rest to eat and swallow some more. Even my fingers could type a sentence or two, and then needed to rest to type some more. I could do stuff but only a few repetitions before tiring out
Good Luck
Russ