Ocular MG
I have been living with ocular MG for almost 8 years now and my symptoms are getting worse. I am now going for eye therapy as a last resort. I have had bad vision since I was 6 years old and have worn glasses but now the doctors are having trouble fitting me with an RX glasses (prisms) because my vision fluctuates so bad and adding more prisms and MORE! Thick glasses are so embarrassing 😔. I was wondering if anyone has tried scleral contacts or what other types of treatment you’ve tried!! So discouraged and just want to see better
I had IVIG and it helped me a lot with my double vision, during a flare from infection and antibiotics. My IVIG treatment was done as 4 hrs/day for 5 days and improved my symptoms by day two. My main MG symptom has always been double vision with a droopy eye lid, even though my neurologist tells me a have generalized MG, because I am anti body +. After having IVIG and more recently adding Cellcept, I have reduced my Prednisone gradually to .5 mg every two days and only 1 to 5 mg of mestinon occasionally when needed due to some temporary trigger. I am also on Mycophenolate Mofetil (Cellcept), which takes a very long time (up to 6 to 12 months) to be fully effective. My doctor attributes my ability to get by on such low doses of the other meds to be due to the Cellcept finally kicking in.
BTW, I find the liquid form of mestinon to cause fewer stomach issues.
I have had oculat MG for 33 years now and have went through all the things you mentioned, spent a lot of money on prisms, thick glasses and many other things and after 33 years it is all the same as the day I was diagnosed. Does your eyelids swell and droop shutting off you sight?
I was on Mestinon 2 years ago and stopped it due to terrible digestive issues. But I have started back on a lower dose and pray in about a month along with therapy I can be fitted with a pair of glasses that will help improve my vision.
Thanks for the article. Instead of trying a different medication the neurologist is trying 1/2 tablet 3 x day. I’ve been one this now for 4 weeks and was hoping I’d see some improvement but all I’m experiencing is an increase in weakness and fatigue. I have no access to a neurologist etc. in my area(that I’ve been able to find) that treats MG especially Ocular. My neurologist he just isn’t
…I’ll stop there. I think everyone with MG understands.
Thanks again for the article and in welcome all helpful suggestions and advice.
If you feel comfortable sharing the region you are in, I can try to look through some potential doctors or see if anyone in your area is a member on the MG sites I moderate, and I can message them to see if they have recommendations 😀 You can send me a private message if you would like to keep your location private! - Jodi, Team Member
Hello! I am so sorry to hear of your recent health decline! Unfortunately, it is common for ocular MG to eventually turn into generalized. Are you currently on Mestinon or any other MG treatment?
- Jodi, Team Member
