Myasthenia Gravis

[livingwith]

I WAS 20 YEARS OLD WHEN I STARTING REALIZING THAT MY BODY WAS CHANGING. I WAS HAVING A LOT OF TROUBLE WITH MY EYES, THEN MY ARMS AND LEGS WERE VERY WEAK AND THE PROBLEMS KEPT COMING. I DECIDED TO GO TO THE EYE DOCTOR AND SHE SAID MY VISION WAS FINE. SO LET IT GO. DAYS WOULD PASS AND I COULDN’T HOLD A BRUSH IN MY HAND OR PUT MY HAIR UP. I THEN STARTED FALLING A LOT MORE BECAUSE I HAD NO FEELING IN MY LEGS. SO I STARTED TO WORRY.
WELL IN SEPTEMBER 2005, MY HUSBAND AND I HAD A BABY. SHE WAS ...Read the full article

[liddyann]

Your post is truly inspiring to me. Trying to decide on having a thymectomy has been very tough for me. I have been putting it off even though my neurologist has been encouraging me to do it for a few years.

Have you had any symptoms since the surgery? Do you take any meds? Out of curiousity, are you from the US? The reason I ask, I'm trying to figure out what we mg people have in common...is it a gene, a drug our mothers took when she was pregnant with us, food we eat, lifestyle??

[ladyyaso]

i am having troubles too in decding of having thymectomy, i am so scared! and i am very sad.

[liddyann]

Ladyyaso,

Welcome to the forum. I understand being sad...fortunately today is not one of those days for me. Some days it feels hopeless, but I always pray that tomorrow will be better. I had my monthly IVIG treatment on Friday. I have to use a vacation day from work to have it every month...I'd really like to use my vacation days for something fun!! This time it took 3 hours longer than usual because I had a rash reaction, so they had to back off how fast they were giving it to me. I have them on Friday's because I feel crummy for a couple of days after and I don't want to miss any more work. I did call in today because I was still feeling unsteady on my legs and using my walker.

The surgeon's office called me to set up a consultation appointment. I haven't done it yet...

[ladyyaso]

hey. hope u r ok today. i did visit the surgen today! he was explaining about the surgery in a very delicate way. i felt a bit comfy, but still feel sad for my self!
the issue is, even if the thymas is atrophyed it might grow later on as a forgin body and cause cancer cells for us (thymoma). so confused.... may God bless us all

[floro1101]

I was diagnosed with Ocular MG about 3 months ago. I am currently taking 240mg of Mestinon. Currently the meds are not working and I have severe double vision. I have a doctor's appointment next week. Should I have my thymus gland checked out? I am having neck pain along with fatigue. Can you tell me if you didn't respond to certain meds? I am so scared and confused

[liddyann]

Welcome to the forum...I hope you get as much out of "chatting" on it as I do.

When I'm having double vision and/or droopy eyelids, my neck hurts, too because I'm constantly tilting my head back to try to regain focus. I visit my chiropractor to help with this.

My doc ordered a CT scan to check for a tumer or enlarged thymus.

Good luck.

[floro1101]

I as well have alot of neck pain. I don't mind the droopy eyelid but the double vision is hard to deal with. Trying to function everyday and caring for my children has been very difficult....thank you so much for sharing your story and repling to my message.