[Sally W Hardter]

Definitely have muscle twitching and definitely linked to Mestinon for me. I started using it when diagnosed with generalized MG in 2013 with ptosis and notice a lot of eye twitching when I use it. I started with 60mg 3-4 times a day which was too much. I had abdominal cramping, loose stools and various muscle group cramping. I have been successful using 30mg three or four times a day. My neuro definitely says the symptoms are Mestinon related so I can’t hardly believe the manufacturer does not recognize this! The drug helps with symptoms but not as much as I’d like 🙂

[Sally W Hardter]

I was diagnosed with MG by my opthalmologist in 2011 with severe ptosis and double vision though in retrospect I had symptoms for a few years prior to final diagnosis including balance issues. After my diagnosis, I was started on prednisone and mestinon and sent to a neurologist. He ordered a CT of my chest and I was found to have a thymoma so getting thymectomy was necessary. I had the option of robotic surgery however I chose full sternal excision feeling this would ensure full excision. I had thymectomy in 2013 and was in a remission with no medications for almost a year however a lingering cold virus caused my eye symptoms to return and I was placed on Cellcept and continued Mestinon. We all hope that full and lasting remission is in the cards but often it is not but I do feel my symptoms were less severe since the surgery. Good luck with your decision!

[Sally W Hardter]

Hi Tracy: Good luck with your decision but most literature on MG encourages the thymectomy regardless of thymoma or no thymoma. I was diagnosed at 59, (nearly 69 now) however I feel that I had symptoms of MG well before diagnosis (double vision, ptosis, chewing problems, talking problems and fatigue, tripping and stability issues) and fortunately my savvy Opthlamologist assessed my double vision ordered proper labs revealing positive ACR antibodies. I also had a head CT . I then had a neuro consult next and placed on high dose prednisone and mestinon. A CT of chest revealed a walnut sized thymoma so thymectomy was done via traditional open chest method as they felt the tumor may be attached to my pericardium so surgeon wanted to full access instead of doing VATS. I was essentially symptom free after surgery and was tapered off prednisone. A viral illness about a year after surgery prompted double vision and ptosis so I have been on Cellcept and mestinon ever since. The thymoma could have become malignant and even if your thymus is healthy now, it could develop a tumor later.

[Sally W Hardter]

Wow, sounds like a reasonably easy thing to try! My neck, face and lower legs twitch and often tingle but I know it’s MG related, nothing pointing to Diabetes or other problems. I’m interested to try this AND, surely it can’t hurt 🙂

[Sally W Hardter]

It is so hard to find the right medication for sure. We are all struggling with that I’m sure. I was off all medication (prednisone-mestinon) after my thymus/thymoma was removed in 2013 but in a year, after a bad viral cold, my eye droop, double vision and general weakness came back. Instead of restarting prednisone, I was placed on Cellcept 3000 mg but that took six months to work and I find that Mestinon really does not work that well for me, even at a low dose of 30mg, three times a day. I get cramping and other GI issues and sometimes I think it makes my eye ptosis worse! My Cellcept was reduced to 1000 mg since I responded so well BUT, low and behold over but this past HOT and HUMID summer, my ptosis has come back and has yet to be resolved. I have been off prednisone for 10 years and my primary suggested a 10 day dose pack to try along with going back to my full dose of Cellcept. So far, minimal help but I refuse to try steroids again if I can really have a say in it and hope that my Cellcept will kick back in! Best of luck.

[Sally W Hardter]

I was diagnosed with MG in 2013 at 59 but had symptoms since 2011. Double vision and Ptosis the main symptoms as well as fatigue and, like you, I was lucky to have a great ophthalmologist who ordered blood work confirming his suspicions and a diagnosis. I had a thymectomy in 2013 because of a thymoma and was in remission for about a year but DV and drooping came back. I have used Mestinon and Cellcept since that time and have had ups and downs but nothing serious. There are LOTS of medication options now and most have been helpful as well as a new medication that hit the market. I have been semi retired since 2019 and found, unfortunately, that drinking exacerbates my symptoms sometimes. I enjoyed a wine or beer but if I overdo it shows. Good luck and the web sites are enormously helpful with information 🙂

[Sally W Hardter]

Exactly the same here but add ptosis, mostly in one eye!