Hi
I was hoping you could help. I have been having muscle issues causing
face drop
head drop,
vision issues,
limb muscles weakened,
breathing issues.
Speech dyastheria

I have been in hospital had nerve tests, blood test but neuro consultant said they are clear, but still looks like mg.

Can you tell me if those tests are the only way for a diagnosis or can I ask for something else. These melts are ruining my life and I really want to get to the end of the issues and wondered if you could give any advice?

Starting to think I am going crazy and I am making it happen on purpose.

Any advice will really help.
Thank you
Christine

Hi, Christine. I'm sorry you're having such severe symptoms and that the diagnosis isn't clear.

Can you be more specific about the tests? First the blood tests: MG is caused by antibodies, but there are three different antibodies commonly tested for. The most common of these is the AChR antibodies. Some people who test negative for those have the MuSK or LEMS antibodies. A neurologist should test you for all three. You should also know that a significant number of people with MG test negative at first, and positive later, or sometimes keep testing negative. Do you know if you've been tested for all three kinds of antibodies?

Second, can you describe the nerve test? Do you know if it was just an EMG or a single-fiber EMG? A single-fiber EMG is a lot better for testing for MG. If it was a single-fiber EMG you had, it would be like this: the doctor would insert a needle into your muscle (arm, thigh, or face, usually) and then ask you to clench the muscle slightly for maybe ten seconds or so while the needle stays in.

If you didn't have all three blood tests and a single-fiber EMG, I would suggest finding a neurologist who specializes in the diagnosis of neuromuscular diseases. There are many of us on this forum who have never tested positive for any of the antibodies, and who were diagnosed by single-fiber EMG.

Abby

Hi Christine..
I too experienced a lot of the same issues you do. MY lips get numb at time, my speech sounds like I have been drinking as well as my right eye gets drropy. Since I was diagnosed and placed on Mestinon and Mycophenolate, it seems to have helped. I still have episodes when I get realy tired or stressed or try to chew too much. But no your not going crazy it all seems to be part of the disease.

Ron