Hi Lee, please feel free to read my introduction post on this thread. I am triple seronegative, but also find it's night and day with mestinon. Get a Single Fiber Electromyelogram (SFEMG) test done. It is considered the gold standard for MG for those who are seronegative. You should also get tested for LRP4 which is the latest antibody discovered to cause MG. Unfortunately, there are likely MANY antibodies that cause MG, but we only have tests for 3. If you are like me and test negative for LRP4, welcome to the small club.

Hi all! I just found this forum, and I'm hoping to find some answers and understanding of this rare disease I have been diagnosed with. Here is my story...

I was an active healthy 55 year old female. Seven weeks ago, my vision all of a sudden became jumpy and blurry. I thought something was wrong with my contacts. I went home and started messing with my contacts. The next day my eyelid was "swollen" and I thought it was because I had messed with my contacts. I realize now that was the droopy eyelid. Two days later, my face felt numb and I could not raise my eyelids to put on my mascara. Ok, better call the doctor!

She had three things she wanted to draw blood for, one being MG. Two days later it came back positive. I made an appointment with a neurologist and had a chest scan on my thymus, which showed a tumor. By the time I saw the neurologist a week later, my symptoms had rapidly progressed. Trouble chewing, holding my head up, walking, etc. At that point they scheduled me for a thymectomy. The thymectomy was scheduled for two weeks later. When I went in for the surgery, they decided I was too weak to do the surgery. They admitted me to the hospital and gave me IVIG infusions for two days.

The surgery went well, and the tumor was benign. I am now three weeks out of the thymectomy, but the MG is still awful! I am home now and have PT and OT 2-3 times a week. My arms and legs just don't want to work. After I do my PT (which is VERY minimal, like 5 minutes of leg and arm exercises with1 lb. weights) my whole body shakes and convulses for about a half hour. My symptoms seem to change daily and sometimes several times within a day. From eyes, to face, to arms, to legs, sometimes even needing a walker.

Right now I am on 80mg of steroids daily, and 120 mg of Pyridastigmine 4 times a day. I go back to my neurologist next week and I think they will start weening me off the steroid.

This MG has been very hard for me to wrap my head around. Two months ago I was on vacation in Rome climbing the Colosseum stars with no problem! Now I can't even get down my stairs at home without having to rest when I get to the bottom. I used to swim a half mile or walk 4 miles a day, bicycle, kayak, etc., UGH!

So that's my story, now here are some of my questions...

1. Have any of you heard of anyone whose symptoms came on this quickly?
2. Will it get any better once they start weening me off the steroids?
3. I've heard it can take 2 years before you go into remission after a thymectomy, but do the symptoms lessen before remission?

I'm sure I will have more questions after I post this, but any insight into this new normal of mine would be greatly appreciated!
Thanks!
Kristi

Hi Kristi

Welcome to NeuroTalk .

I am sorry to read about your MG. I don't know much about it but I am sure that other members will be able to offer you support and good ideas.

Best wishes.