Ocular MG? Which Treatment Has Worked Best for You?
Do you have ocular Myasthenia gravis or at one point did before it turned generalized?
What treatment, if any, has helped you see any improvement?
If you had ocular MG that turned generalized, how long did the treatment keep your MG at an ocular level/type?
Hi,
This started with my vision doing a 'glitch' moment, anout 5 yrs ago. Double vision started 4 yrs ago, slowly at first. Now, many times, it feel like my eyes are a slot machines, and blurry alot. My valance started 1.5 yrs ago, and it wasn't until then that my neuro did more tests. And here I am. I've been on mestinon, to no avail, the prednisone (lowest doese) has horrific side effects, so ny specialist put me on Mycophenolate I think it's called, and all I can say is that the treatments are worse than the disease! I do hope they find some kind of better treatment that's affordable and worksNone
I’m sorry to hear you haven’t had much luck with treatments. Is there anything you have found helpful outside of medications? Thinking of you, Julie (team member) Good Morning Julie! Some things I can do for my eyes is to keep one eye closed and to alternate that, but the 'rolling'' and 'shifting' they do is only relieved if I rest them with a cool cloth over them.For my balance, I bought a pair of shoes that have a wider sole than the acutall shoe ,lol, so I don't fall, just rock a little. No shopping as I have to read some labels, not to metion making quick decisions is not one of my better qualities lol.
My heart bleeds for those who've been to the ICU. Being in Canada, the FDA here takes 10 yrs to put a medication thru.
I hope the fall weather helps everyone better than the summer did 🙂
Thanks for 'listening' , and I hope everyone's day is better than the last!
Rest is the most optimal relief. Sometimes I patch my tired eye and keep doing whatever activity I am involved in. My problem is that I have difficulty resulting from glaucoma in my right eye and now the ptosis is more prevalent in my left eye.
Welcome to our community! We are thrilled to have you join us. Your unique journey with MG is of great interest to us. How long ago were you diagnosed? Surprisingly, there is not much discussion about coping with MG vision symptoms with Glaucoma despite it being a side effect of prednisone. I started a discussion to see if this is something others in this community are dealing with as well. Here is the link if you want to add the first comment to get the discussion flowing: https://myasthenia-gravis.com/forums/dealing-with-glaucoma-and-mg
-Jodi, Team Member
Nothing
We are sorry to hear that. When were you diagnosed, and for how long have you been receiving treatment? Have you noticed any improvement, even if for a short duration?
- Jodi, Team Member
