Greetings and Happy Holidays,
For the past 5 weeks my mom has had double/blurred vision and believed it was centralized with her vision and sought new glasses. The symptoms and eye-lid drooping progressed and she finally made a doctors appointment on 12/23/15. Unfortunately and fortunately her appointment coincided with severe neck and back pains and an MRI/CT scan. Doctors diagnosed her with MG, and she is going back 12/29 for a follow up appointment with a neurologist.

I know my mom is terribly concerned, worried, and fearful of what's next for her and if MG is the correct diagnosis and if the muscle weakness with progress to other areas in her body.

So my question is, to family members of those with MG and those with MG, if you could go back to the initial stage of diagnosis, what would you have done, what information would you prepare or research and what questions would you ask of your doctor?

My mom is 60 years young, besides being fairly skinny, she's in great shape and is active. Has a great deal of stress in her personal and professional life. I recently moved 90 miles away (previously was 8 miles), I want to be there for her but I also want to ensure we as a family are doing as much as we can, as early as we can.

Thanks! I appreciate the insight and am glad there are forums like this.

Hello, I hope you Mom's appointment on 12/29 provided her with more information.
I am newly diagnosed and just a little bit older than your Mom. My problems became noticeable with eye issues. That was the first quantifiable symptom that could be measured. So getting closer to a diagnosis got some traction at that point. I had been reporting fatigue, muscle weakness, swallowing issues, and shortness of breath before. But as those are subjectively reported, the doctor put the complaints down to being old and de-conditioned (I had stopped exercising because I was too tired).
As to a diagnosis, I am sure the doctors your mother will see will have some test results that support their decision. Apparently they do not give out an MG diagnosis easily (as I have read many posts here from people here on this site who have waited for years for someone to help them with their life changing medical problems).
I was not diagnosed until the SFENG results indicated MG. I was glad to get a diagnosis as it explained all my physical complaints, but I was also scared to know that I would be wrestling this bear for the rest of my life.
As to what will happen in the future for your mom -- there is probably no way to know as each person is affected differently from what I understand. If she could make one big change I would like to suggest that she seek a way to reduce her stress level, even if it means retiring from work. I know I lived with stress, actually fed off of stress to stay on the edge in business, and now I have to completely change my views on stress. Stress is not good for MG.
I hope others write their thoughts for you too. You are a good daughter to be helpful to your Mom.

My husband has been diagnosed with MG going on 3 years. For several years prior to his eye drooping, he was losing weight for no apparent reason. His doctor chalked it up to old age (he's now 84). The weight loss was his first symptom, and it was several years later that his eye drooped. His opthalmologist (sp) sent him to his buddy, the neurologist, who ran a jillion tests and one/or several indicated MG.

He immediately went on mestinon which took care of the eye droop--he took half a pill three times a day. He cleaned up his diet, stopped eating candy bars, we went gluten free and concentrated on lots of vegetables and supplements recommended by Dr. Russell Blaylock, retired neuro surgeon who now studies natural supplements. He also started IVIG infusions.

He has progressed to the point now where he only takes half a mestinon once a day, and sometimes forgets to do that. The doctor is now increasing the time between IVIG treatments to 8 weeks. He has definitely improved. He still gets tired and naps quite a bit, but also still goes to work every day at the business he and our oldest son operate but comes home early. He was exposed to Agent Orange daily while in Vietnam and his doctor thinks it is the cause of his MG. Moral of the story is that there is light at the end of the tunnel however.