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
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 ❤
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.
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.
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 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.
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?
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.
My MG went into remission on its own. Thank God.
Mine did also...for four years. Now it's back and I am having a thymectomy in a few months (July).
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
Thank you for this. My Daughter is having her thymectomy today.
I have my thymectomy 4 months ago i the best decision I getting off my medicine little my little now I can talk I can eat
Mine is tomorrow! Thanks for the video. It was very helpful!
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!
Thank you so much for sharing, your story gives me so much hope, as I am making the decision of thymectomy or not. Your attitude is very inspiring.
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
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 ❤
How did it go?
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.
Thank goodness for a good GP. Hope your thymectomy goes well and that you can do a minimally invasive one so the recovery will be easier.
What's your diet like?
Doug, how did everything go regarding your situation?
I am having my thymectomy in less than 3 weeks and I'm so nervous!!
Good luck. Claiming that everything will go smoothly and your recovery will be fast. ✨
Hello there ✨🙏💫how are you doing after your Thymectomy? Hope you are doing good
Thank you for sharing! I am getting a referral for a thymectomy. My new neurologist thinks I would benefit from it!
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.
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
I hope you get all of the relief!!!!
Hello there
How did your Thymectomy go ?
Hope you are doing good?
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 💓✨🙏
Congrats. Any update on your symptoms?
Thank you for video , so good you are ok now🙏
Yes. I'm doing much better now. Thank you for asking
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.
Hi. I hope you're better now. That sounded horrible. Did you end up doing the thymectomy? Any results?
Thanks, mine will be 3 days later.
Hi. Congrats. Can you tell us how you're doing now? Any MG symtoms or medications?
Thanks for this info
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?
I'm against unnecessary surgeries. So I completely understand. Nope. I'm off all meds now 🙌🏾 We weened down slowly over a year and a half.
@@IsWasWillBeomg wow... you're the 1st person I heard say that they were on no meds after surgery... that gives me hope