Return of diplopia
When I was diagnosed 10 years ago, my initial symptom was first "scrambled" vision then double. It cleared very quickly (2-3 days) during my 5 day hospital stay. I've been on Mestinon since and added cellcept a year ago. My double vision returned three weeks ago and adjustment of med dosages have not worked. My question is has anyone gone this long with no visual issues then out of nowhere they're back?
Yes. 10 years is a very long time to be on Mestinon (pyridostigmine). Your body can become so tolerant that the med loses its effectiveness. Don't worry if it doesn't work anymore. It is not an immunosuppressant and does nothing to reduce the flow of bad antibodies. That is what the Cellcept is for. Your situation is not unusual. MG likes to remind us occasionally that it is still there and should not be taken for granted. If your doctor has increased your dosage of Cellcept, it may take more than a couple weeks to become effective. Hang in there. If you get to the point that you can't stand it, there are many short-term remedies. Ask your doctor about a Prednisone burst or an IVIG. They can get you by until the Cellcept does its job. Best of luck.
Yes I am now experiencing the vision issue some blurry and ptosis in my right eye. Which is unusual, typically any fatigue appears in my left eye and I haven’t had any issues for about 8 months since starting Rystiggo
I was recently diagnosed with Myasthenia Gravis through lab work. For the past year and a half, I’ve had recurring episodes of binocular diplopia, sometimes lasting up to 45 days. During that time, I underwent CT scans and MRIs, and even tried antibiotics, but nothing helped. The double vision became severe enough that I couldn’t drive without prism glasses.
The only treatment that has consistently worked for me is prednisone. My symptoms resolved for about 5–6 months after starting it, then returned, but another course of prednisone cleared them again for a few months.
I met with a Nurse Practitioner last week who suggested trying Mestinon. For now, I’m planning to wait until I see a neurologist in December before starting it. In the meantime, prednisone has been my short-term solution—and I’m hopeful it will continue to help.
Good for you. You are doing everything right, A neurologist is your next step. He or she will probably put you on an immunosuppressant, like Cellcept or azathioprine. You may also be prescribed Mestinon or prednisone as a stop-gap med because the immunosuppressant can take months to go to work. Be hopeful. The first several months of MG are usually the worst. It will get better once you are stabilized on an effective long-term regimen. Mestinon is effective for diplopia as it raise acetylcholine but has a short life and side effects. I prefer the supplement Huperzine A. which is similar and natural.
Hi, I've gone four months without visual disturbances, ie diplopia and I found that now that it's back, (it's been 4 months) I wonder if these are a kind of remission?.and is this life long... I wish you well
