Treatment for Ocular Myasthenia Gravis

[paul spychalski]

Yes I have Ocular MG and Pyridostigminen HELPS

[Nicola Biagio]

So Paul, How much salbutamol are you using?

[matt-sereby]

I have GMG but my only principal problem is ocular. After Mestonin and steroids were no help to my closed eye situations I then had fusions. Eight infusions of vyvgart as well as two of rituximab. I got about 4 days of my eyes being open after those. Finally went back to where I was first diagnosed as he had been following me throughout my journey. My ophthalmologist operated on me and attached muscles from my forehead to my eyelids. Can’t tell that it was ever done. My eyes now stay open and close normally. Best thing that ever happened to me. The decision was about 3 years in the making. I spent most of that time with Band-Aids holding my eyes open. Not to be taken lightly but it is a very good solution,or at least a has been for me.

Matt Sereby

[paul spychalski]

Your eyes now stay open but do they cross?

[Hilda Edwards]

I was diagnosed with optical MG in September 2019. They put me on 60mg mestinon x. 5 times a day which did absolutely nothing for me at all. February 2020 I finally got an appointment with the neurologist who then prescribed me 30mg prednisone every other day alongside the mestinon. That was when the double vision finally cleared.I had the usual diarrhoea problem with the mestinon lasting months, eventually my neurologist put me on probanthine 3 tablets per day. This did the trick!!!! I came off the mestinon earlier this year without any noticeable deterioration other than tiredness. Neurologist also reduced prednisone to 25mg every other day.The optometrist said that the tiredness was due to not taking the mestinon and immediately put me back on 1 x 60mg mestinon per day. I would like to reduce the prednisone down much further as it has thinned my skin and I bleed at the slightest touch’. So far the Mg has not affected other muscles and nerves in my body. So I count myself lucky. I am 84 years old now.

[paul spychalski]

Mestinon didn’t work for me either. I went to a Neurologist that deals in MG and he put me on Pyridostigmine and that helped a lot. My eyes still move and I get double vision. Hope this helps.

[John]

<div>Mestinon didn’t work for me either. I went to a Neurologist that deals
in MG and he put me on Pyridostigmine and that helped a lot. My eyes
still move and I get double vision. Hope this helps.</div><div>

Paul you mentioned above that Mestinon didn’t work for you and yet Pyridostigmine is Mestinon. I think?

</div>

[paul spychalski]

I don’t know whatthe chemical difference but I still take pyridostigmine, it works. Now the put me on Mythylprednisolone and that helps with my vision, balance walking and that makes me real happy, I was given doses of 4mg pills, 6 the first day, 5 the next then 4-3-2, and 1. The 3 that day worked the best. Depression thoughts happened but stopped when I took my sleep pill. I go back in 3 weeks and I’m hoping!!!!