Strange Happenings

By Zigge1

1 min read

I was first told I had MG in 1976 back then no one really knew too much about it, I was lucky and had a great eye doctor who actually read about this new disease and referred me to an even better neurologist.

Symptoms over the years

Mine was more ocular at that time and was treated with prednisone. Forward about 10 years when I had my first child, things really took a turn. My eyelid closes, my limbs become affected so that I can hardly walk, and can't lift my child, neurologists suggest thymectomy which at that time they cracked your chest open just like open-heart surgery. Forward a couple of years and I hit complete remission.

Where I am today

Forward today, I am concerned my eyelid is trying to close up on me at times, and my legs seem to be getting a bit weak. I guess it's time to let the neurologists know. I hate that I might be coming out of remission.

Share my own story

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Jodi Enders Moderator & Contributor
<inline-mention username="Zigge1" user-id="4532795"/> Hey! How have you been doing? - Jodi, Team Member
1. Zigge1 Member
 <inline-mention username="Jodi Enders" user-id="4496596"/> So I finally got into my neurologist today, he said he feels I have come out of remission but I wanted to wait for the Acetyl Antibody tests before I start taking any meds, I will keep hoping its not but feel my luck has run out on staying in remission. Guess 30+ years was a good run.
2. Jodi Enders Moderator & Contributor
 <inline-mention username="Zigge1" user-id="4532795"/> My deepest sympathies! That must be challenging for you to accept! Please keep us updated and let us know if you want more information on recent research and treatments! - Jodi, Team Member
Sally Farrier Moderator & Contributor
 Zigge1 I am also sorry for the late response to you!! I also in 2020 just came out of an almost 10-year remission. Although I was undiagnosed until I came out of remission. My symptoms started about 1974 age 10. How old were you in 1976 when you were diagnosed? I am so glad to hear you went into remission. How many years ago was that? I do understand how heartbreaking & scarry it can be to come out of remission. It is like your whole world is crashing down again, or at least for me that is how it felt!! And those darn eyelids closing up!! This year 2022 I am lucky to be able to open them at all!! That is why I had not responded; I have been doing very little this year because of not being able to see. Again, I am sorry for the delayed response. Have you been able to see a neurologist yet? Also how are you doing now?? Sally (Team Member) 
1. Zigge1 Member
 <inline-mention username="Sally Farrier" user-id="4153220"/> So I finally got into my neurologist today, he said he feels I have come out of remission but I wanted to wait for the Acetyl Antibody tests before I start taking any meds, I was 19 years old when they first diagnosed me. I am praying this isn't happening again but my gut, and eyes are telling me different. I hope things improve for you soon. Take care.
Juliana Texley Moderator & Contributor
First, apologies for belated response. I don't know how this was missed, but I do hope that you've found less direct understanding in other threads.) It looks like you've been struggling with this for a long time. Yes, it is possible to have very low level symptoms for a long time and then have a flare. Do you have any clues from other health conditions? MG can flare from completely unrelated body stresses. Please do re-consult your neuro, and keep in touch. Juliana (Myasthenia-gravis.com team)