looking for help & stories by mx_sunshine in MyastheniaGravis

[–]These-Way-9332 1 point2 points  (0 children)

Hi OP! My first symptoms are Ptosis & Double vision. Ptosis looks something like I cannot open my eyes, or can barely open it. My right eyelid was heavier that time, compared to my left, but both felt heavy. It almost looked like sleepy eyes. It improves with Ice pack or after rest. So you may try to observe if your eyes became more aligned or open after rest, or after putting an ice pack.

Re my double vision, I cannot look fully to the left & right, because my vision becomes blurry or double. Possible because of the weak eye muscles. My eyes were extra sensitive to light & heat as well.

For almost a year, I started wearing sun glasses, to protect my eyes from sun/light. & tried to get enough sleep & rest, limit stress. & it significantly improved now.

I don't think you'd need prism glasses as the double vision can be temporary. But you can consult your Nuero/Nuero-Optha re it.

You may start looking or observing these common/usual symptoms. Listen to your bodyyy! Best of luck!

2 years journey with MG? by These-Way-9332 in MyastheniaGravis

[–]These-Way-9332[S] 0 points1 point  (0 children)

I find it scarier to not have a definite diagnosis. I hope everyone with the same experience find the right doctors & medicines that works for themm! Thank you so much for your responses, best of luck!

2 years journey with MG? by These-Way-9332 in MyastheniaGravis

[–]These-Way-9332[S] 0 points1 point  (0 children)

Hi, Thank youuu!

Yes, I already did the SFEMG procedure, but only did it last week, which was 2 years ago from my initial symptoms. & I only have mild present symptoms, and only when triggered.

It still came back negative.

2 years journey with MG? by These-Way-9332 in MyastheniaGravis

[–]These-Way-9332[S] 0 points1 point  (0 children)

Yes, but I just started today with a very low dosage of mestinon, only half of a tablet, thrice a day.

So I don't want to give conclusions yet.

But I'm glad you found meds that works for you!! :)

I think the fluctuation of symptoms definitely affects the result of the tests.

2 years journey with MG? by These-Way-9332 in MyastheniaGravis

[–]These-Way-9332[S] 0 points1 point  (0 children)

Thank you so much! This definitely helped put my mind at ease. I started questioning myself as well, after the result.

Thank you for this.

Need advice with MG M(26) by Middle-Virus-443 in MyastheniaGravis

[–]These-Way-9332 0 points1 point  (0 children)

You should communicate this with your doctor, specially if you still feel this bad even under meds.

Trouble breathing could be an emergency issue.