Gina
Forum Replies Created
-
Same here, very blessed to be doing quite well although have some lingering swallowing issues and awkward facial droop.. no complaints though – been over 50 years with mg and lived and still living a full life…
-
It is from mestinon – sometimes it happens to me when I take too much Mestinon – In addition to the gastric issues..
-
Not only do I have a droopy eye – I also have a right/side droopy and floppy face. It’s very noticeable and mestinon no longer works.. I did do prednisone for 8 years which helped some but stopped many years ago when pregnant. One neuro said I should get a face lift. Anyway, I have a appt with a new neurologist but it’s in 6 months. Crazy long time to wait. I also have trouble swallowing..
-
My thymus surgery was quite easy.. had it done trans cervical way back in the 70’s.. took less than two hours and I was home in several days.. Thymectomy did improve my MG and I have been stable for the last 50 years.. still have symptoms the worst being difficult swallowing-
-
I take this but have to break up capsule since it’s too difficult to swallow… I do quite well except for swallowing – it’s always a problem and nothing helps…
-
I had my thymectomy after 5 years of severe symptoms… I was 22 yrs and had it done thru my neck back in 1972. The surgery was about two hours and I was home within 5 days; continued on low dose pred along with mestinon.. the surgery definitely helped and I have been stable .. no fluctuations or problems.. never been hospitalized since and have not taken any meds in decades. Still have some lingering issues but very grateful…. I’m 73 .
-
I have mg for decades.. Did the usual protocal – mestinon , prednisone and thymectomy. Mestinon no longer works, pred took for 8 years stopped when pregnant and I believe thymectomy helped since I am stable.. I can function ok but still have swallowing issues and r/s facial droop. The last two neuros seen think I am doing ok and one would not even script me mestinon ( got it from my primary Dr tho) One Dr told me my mg ran it course and I have residuals 🤦♀️. I have appt with a new neuromuscular Dr ; anxious to hear his advice.
-
Swallowing , smiling. Speech and eye fatigue. I have mg for more than 50 years and currently take no meds although I have symptoms. The last two neuros seen says these are leftovers and I am probably stuck with them. My right side face also drops.. I don’t even know if meds can help at this point.. I do have mestinon but I don’t see any difference..
-
I am going to have derma fillers next month — I have a very deep crease on one side of mouth because of droopy mg face.. I believe it’s restylene..
-
I have r/side droopy face too and that crooked smile.. I have it for years and don’t think it’s gonna improve. The drs don’t care since I am relatively stable. Mestinon does not help and he will not prescribe prednisone. I am willing to try anything at this point..
-
I first met someone with mg about a year after my dx. Her husband was selling raffle tickets in support or mg and Approached my husband to buy one (co-workers).This dear lady called me and thru her I met three other ladies with mg..Shortly after, I met another young lady with mg and we are still friends today 40 years later. Also, a HS friend has mg as well as a nearby neighbor.I bought my house from a lady and her mom has mg.
-
17 hr surgery, wow, you had great surgeons. My brother passed at 41 years from esophagus cancer 6 months after dx.
I had my thymectomy when I was 22 years old. I am now 71 and having surgery to remove a mass from my throat.
I am happy everything worked out for you.