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...
So I was in the ER Monday night for chest & back pains that started at 8am. Didn't feel like anything heart related but of course they have to do an EKG and chest xray to r/o my heart. It felt like someone stabbing me, it was awful.
I spoke with the PA (about my working diagnosis of MG) who was incredibly awesome, actually better than the several doctors I have seen over the years. She agreed with the diagnosis of MG. Of course I need to get that hopefully from Dr Weinberg next Wednesday, but for her to understand what I've been going through was a wonderful feeling. I also yesterday had my barium swallow, which was successful too. It did show some spasms and esophageal dysmotility. It was really interesting to watch the video, I was so excited about it!! The radiologist said to me "no you are not crazy this is happening while you eat and drink". I almost cried with happiness because all these months of doctors looking at me like Im crazy it was nice to hear twice this week that IM NOT!!!!! Yeah! So appt is Wednesday with Dr Weinberg, hoping for a diagnosis so I can move on. Being in limbo really stinks.
I spoke with the PA (about my working diagnosis of MG) who was incredibly awesome, actually better than the several doctors I have seen over the years. She agreed with the diagnosis of MG. Of course I need to get that hopefully from Dr Weinberg next Wednesday, but for her to understand what I've been going through was a wonderful feeling. I also yesterday had my barium swallow, which was successful too. It did show some spasms and esophageal dysmotility. It was really interesting to watch the video, I was so excited about it!! The radiologist said to me "no you are not crazy this is happening while you eat and drink". I almost cried with happiness because all these months of doctors looking at me like Im crazy it was nice to hear twice this week that IM NOT!!!!! Yeah! So appt is Wednesday with Dr Weinberg, hoping for a diagnosis so I can move on. Being in limbo really stinks.
The Neuros at St. Elizabeth's - are terrific!
(I'm sure that only folks here will understand that.)
Kimber
-Juicy foods
-Keep small mouthfuls, nibbling if really weak
-lettuce (I love my salads, but between the chewing and swallowing)
-chicken is another of my chokers not sure why
Soups
-If I am bad, liquids must be thickened
The only symptoms I was experiencing on day of test was my ever present double vision, and I still had trouble with liquids. It truly is a reason for caution, as aspiration can be a major issue.
just be careful! so glad you are headed in the diagnoses direction
Annette