Newly Diagnosed

Tina
I was diagnosed five years ago with ocular MG - double vision and was put on mestinon - I really can't remember how long I was on it but started waking up at 2 am with horrible muscle pains in my legs which is a side effect of the mestinon. So I got off of that and went on several protocols of steroids low doses 10 mg which helped a few times. My eye doctor prescribed prisms in my glasses that were extremely helpful. The last time I went in he tested my eyes before I ordered a different set of prisms (when I looked down I saw double-so at work the keyboard was double, stairs were double(I actually fell and sprained my ankle a year ago) I like you am so frustrated when reading the trial and error of the meds for MG
And the different side effects people have experienced in my MG coffee group. Now my double vision has cleared when I look down but I still have it peripherally on the right side. I have experienced two flares which may put me in generalized MG - one experience was rather scary - fatigue, muscle weakness so I couldn't finish cutting the meat on my plate, or lift my arms and legs. Felt like dead weight. A day before this my speech got slow and just tired sounding. I met with my doctor and now have the mestinon prescription to take if I feel a flare coming on if I get enough warning.
I still work part time and felt great taking on more hours until it caught up with me. My sleep is also affected by MG.

I am frustrated that it takes me months to get into see my neurologist ophthalmologist- when he did see me he said I may be eligible for infusion therapy.
I have decided not to get on any medication unless I end up in the hospital with a crisis. I am not giving any advice - just my story - and interpretation of what I've experienced around me with other MG patients - the results are depressing.
My goal is to keep working out and looking for some kind of holistic way to deal with this on a cellular level. Listened to a podcast on MG and hormone therapy and how estrogen may affect this - but again not enough research.
Good luck in your search for treatment.

I'm glad that you found us!

This page covers the basics of Myasthenia Gravis; causes, symptoms, etc: https://myasthenia-gravis.com/basics

For more info on treatments, please click here: https://myasthenia-gravis.com/treatment

I hope you find them helpful.
Warmly, Chelley (Team Member)

Hi. Tina,
You will need a neurologist, not an ophthalmologist, and you will have to take a few meds. Not many. Your actual treatment will depend on the type of MG you have and how you respond to meds. Buckle up. You have many months of meds and trials ahead. Ocular MG can be easy or hard to control. It may or may not turn into generalized MG. You can live happily with MG, but you will need to take it seriously. The cause is bad luck. Leave it at that. The sooner you dismiss the anger, the sooner you will find renewed happiness.

Best of luck to you. Stay in touch with this very caring community.

Hi TinaLou,

I was diagnosed in February. To deal with the double vision I was put on Pyridostigmine which helped my eyes back in-synch. Then, I also started Prednisone which has helped with other symptoms like my droopy eye. I think you'll find most of the MG people started treatment in a similar way. Once the main symptoms are being being helped, your doctor will likely get you started on some immune suppression meds and eventually taper off the Prednisone. The folks on these threads will be able to tell you about most of the different treatment options. Hoping you have much success in your treatments!