I have Lambert Eaton Myasthenic Syndrome, which also attacks the neuromuscular junction and has similar symptoms to myasthenia gravis, although mg has not been entirely ruled out as a secondary disease, because my bulbar symptoms are much more exaggerated than a typical LEMS patient.

Have you experienced any speech or swallowing difficulties and how has it affected your daily life? How do you compensate for your limitations?

Yes. Even though I am much stronger at this point, I can still experience weak voice if I talk too much, expend too much energy with other activities, etc. I have to be careful with swallowing, even though it is better. In October I had a feeding tube placed, but in December, I was able to have it removed because of improvement from rituxan treatments. Let me just say that I have to be mindful of how and where I eat and under what conditions. I no longer eat out, because it can be very embarrassing. I do, however, get things and bring them home and eat them. When I was in the hospital eating was one of the most tiring and difficult things to do.

Were you seen by a speech language pathologist? Any positive or negative experiences you would like to share? Therapy techniques they tried that did or didn't work?

I have been seen by three or more speech pathologists because of my extreme problem with swallowing, mostly in a hospital setting. I have also seen one outpatient for evaluation and outpatient therapy. Therapy such as swallowing exercises, tongue exercises, etc. proved to only exacerbate weakness and caused weakness in other parts of the body. During this time was when I discovered that I no longer have a gag reflex and pills or particles of food can sit at the back of my throat for periods of time without my knowledge of their presence. Swallowing has been the most difficult and stubborn to treat symptom since it first developed. I am currently experiencing significant improvement with swallowing since undergoing rituxan treatment in December.

Did a speech therapist assist with diagnosing or referring you to a doctor who could diagnose your MG?

No, I was already diagnosed when I first saw one, but the one I had at my local hospital that tried the therapy and also did swallow studies when I was hospitalized, knew I had a problem, because she could see it firsthand.

How has your ability to work been affected by your MG? (Specifically interested in speech or swallowing issues but all info is appreciated)

I was not working at the time I got diagnosed, but if I had been, I would have had to quit. For a while it was impossible for me to carry on tasks of daily living. I am much better now, but don't think I could tolerate a regular job. I can no longer go to sit down restaurants, due to the fact that I have to use muscles to get me inside, then to sit upright, which makes my swallowing play up. At home, I spend a lot of time reclining and resting between activities, and it is dangerous to try to do other things while eating. I have totally adapted to the way things are and am fine as long as I don't push my limits.

How has your social life been affected? (Same as above)

I can no longer make plans because, as Mark said, you don't know how you will be on any given day. I can't go to stores that don't provide handicap carts to get around. Although I am walking now for short distances, i have difficulty sitting upright to shop for longer periods. My neck and my core muscles get very fatigued.