Hi, new here and confused
 

Hello all. I have been browsing ever since a physician friend of mine suggested that I get tested for MG. Six months ago I had an episode that was considered a stroke at that time, yet it was a diagnosis of elimination. Two weeks ago I had another episode (the ER calls it right eye droop), and that is when my neurologist suggested getting me tested for MG.

I have been in pain off and on since May of 2011, with some burning and numbness. Initially, I went to the doctor to figure out why my leg was hurting so much, and the pain eventually spread to other areas of my body (even my face sometimes). I have been having blurry vision for quite some time as well, and I recently found out I need glasses even though I had perfect vision.

On one hand, I'll be glad to have answers, but on the other, I am terrified of the testing. I had no idea that my eye drooping episodes could be the result of MG, and I'm really nervous about getting a diagnosis.

My neurologist thought I was crazy until he saw the chart from the ER that verifies my eye drooping issues. I am scared to know the truth, even though I am tired of living in pain. Any advice for someone new to this?

I dont have MG, but I do have MS. I just wanted to hug you :hug: Having any long term, unknowable disease stinks!

Keep a journal. This way you can point back to specific days and say "see the pic" this is what my eye does. and the MD can see if for himself. then if you went to the ER, he can see the reports on that day.

There are a handful of diseases that are catch alls. Once they get to the bottom of the barrel and cant explain it, they are left with a dozen or so and have to pick the one that best fits what symptoms you are showing. Helping them by clearing documenting what happens when you are not in front of them will help.

Then, do your part. Eat healthy, get some exercise. Sit in the sun for 15 mins a day and get vit d. Take a multi vit. practice yoga and meditation.

Then come back here and get loads of hugs :hug:

Hi, and welcome. It's good that you found us. We all understand what you're going through--how terrifying it is, with all the unknowns. I hope that you will find that when you have some answers, it's not as scary any more. That's how it was for me. Once I knew what I was dealing with, I could start dealing with it--but not before!

Please ask questions here. If they schedule you for testing, ask both the doctor and us what to expect. If they start you on a new drug, ask about others' experience with it. Nothing makes us happier than being able to help someone else who's going through what we're going through.

Above all, be careful. I don't know if you have MG, but just in case, you should know that MG can be unpredictable. It can tank really fast. If you suddenly have new symptoms, or if you're very weak, or if you have any trouble breathing or swallowing, these are medical emergencies. Don't wait and see. Get to the ER, even if you have to call an ambulance.

We hope you get good, clear answers soon. And don't hesitate to ask questions here.

Abby

While you're getting tested for all sorts of things, PLEASE have your doctor do a Celiac Disease screening. Many people with MG benefit from a gluten-free diet (the "cure" for Celiac Disease), and about 1-in-133 people will test positive for it, even though 97% of them don't have "typical" symptoms.

The pain is a curious symptom, though - most people with MG don't experience pain as part of the disease (although some do).

The eyelid drooping can be indicative of other things as well - please be sure that your doctor runs ALL of the tests for MG, which will include some which can catch those other conditions. Many people with MG test "negative" for the disease, but still have it - in those cases, it is more of a process of elimination to get to the diagnosis.

In any event, we are all here to help you get through this!