I am 12 days post Robotic Thymectomy. I would not say that I feel well enough to go back to work. But, I am already having improvement in my MG symptoms.
Thanks for sharing. How long did it take to go into remission? Did you change your diet? Can you share Any changes in your habits from before and after remission
Our MG medications are soo time specific!! I had an issue with Nurses wanting to not let them be with me when I had Gallbladder Surgery. I’m waiting for Thymectomy and am feeling soo hopeful about having improvement in my MG Symptoms. I’m so happy you have had good results!!! Thanks for sharing!
Hello dear I’m having my Thymectomy 4 days from now today is September 23rd Diagnosed on August the 1st Taking Mestinon only Mostly Ocular MG Did you have your Thymectomy done ? Hope you are doing well
Thank you for the perspective. My neurologist has recommended a thymectomy, just trying to get scheduled. Have great hope for a normal life again! I'm 64 so it's a bit more challenging for me. God knows how long I've had it - took a very vigilant GP to put the symptoms together.
Hello gorgeous ❤I’m so happy that you shared your experience! I’m about to have this surgery in a few weeks and you have helped ease my mind about the whole ordeal! I’m gonna do it and I Will Be OK 👍🏾 I Hope you’re doing well ❤
I hope it works out for you. Even though the thought of surgery is scary, I haven't heard anyone in the MG community say that they regret having the thymectomy honestly.
Hey guys can you all weigh in if you are seronegative or have the antibodies? I’m negative. Was originally diagnosed in 2013, was on prednisone 50mg, imuran and mestonin. Recently came out of remission and this time I’m unable to tolerate mestonin at all. Tried every which way to take it, broke pills down into quarters and everything, side effects were worse than the symptoms of MG. I’m just really struggling. My stress level is through the roof and not much hope of my home situation changing either. Husband had a stroke and he’s where he’s always going to be with his needs. I also have multiple other autoimmune diseases and they’re also flaring at times too. I’m going to see a third neurologist in a week. I’ve had a positive EMG/SFNCS as well. I did a genetic test which one of the very young neurologist told me because of the genetic test I don’t have mg. My head is spinning and this is also causing lot of stress too. I’m only taking prednisone 10 mg this time due to some pretty serious osteoporosis. I’m also having trouble with elevated blood pressure and my meds for this are not holding it down. I’m beyond exhausted and weak, have ptosis in both eyes left worse than right. I also have a lot of pain and thank goodness I do have pain meds for this. I’m out on disability due to severe issues with my autoimmune diseases and at the time I retired my MG was not a factor, that just flared last November, after a pretty resistant urinary tract infection. I feel like I’m “wagging the dog.” Anyway if anyone would respond if they’ve had positive or negative antibodies for their mg I would appreciate it. I’m trying to see how many had a thymectomy with good outcome who were seronegative. Thanks everyone and be well.
i am about to get my robotic thymectomy done and i am very excited to be able to run ,drive, being medication free. even now while i am typing my hands are hurting so i am looking forward for the surgery
Love this video thank you 😊 You helped me to say yes to the surgery My Thymectomy is scheduled for September 28th I was diagnosed on August the 1st .. 4x2 cms (mass) Taking PYRIDOSTIGMINE only 3/4. Times per day Mostly ocular MG sometimes I feel some weaknesses in my arms Thank you again Hope you are doing great 💓✨🙏
Hey Morgan Terrified of anesthesia--> me Terrified of surgery--> me So I'm probably NEVER gonna do it. Thank you for sharing though, and I'm glad u are doin alot better.. Question though .. are u still on all the meds?