[Scott White]

I was diagnosed in Sept 2016 @ 50yrs old, my MG then was only OMG (Ocular Myasthenia Gravis) My Neuro Opthamologist was who diagnosed me, and also told me that MG typical generalizes in 2yrs or less, was on Mestinon & Prednisone and once a month IVIG treatments, he was right @ about 1yr and 6 months it generalized, continued the treatments, but they were already starting to not provide any relief after it generalized, Prednisone was increased as was my mestinon, but IVIG dose stayed the same and it was starting to no longer work for me, Jan 2019 I asked my Neuro if I can get the thymectomy done, did the CT in March nothing showed on the CT scan, got scheduled for the VATS thymectomy with the Davinci Robot (May 2019) only a overnight stay, my thymus had grown up into my neck and started to grow around my heart – I was out the next day, doc already had me setup for a 2000mg Cellcept script to start on and still wanted me to continue the IVIG every month which I did, after the surgery I saw an immediate strength increase in my arms/legs and overall stamina, was still on Prednisone @ 60mg a day and 320mg a day on Mestinon and now on Cellcept @ 2000mg a day, he wanted to get me off the Prednisone. while I was still doing the IVIG as well, I was doing this at home now, long story short they changed my IVIG from Gammagard to Panzyga for my 1st week July treatment, that was the beginning of hell, spine was being torn out by the predator, the pain was on a whole next level, that night my wife had to take me to the ER, as I lost the ability to speak, I got admitted and ended up in ICU for about a week, then they transferred me to the neurology floor where they started giving me high dose steroids via IV where I wasn’t getting any better, by the 2nd day there I went into paralysis and stopped breathing, but before that could happen, my mother was visiting me and before I could no longer speak I asked her to put me into an upright position, which then allowed me to breathe again and then she rung the nurse, after that moment I called my neuro and told him what was going on and he told me they were not supposed to give me high dose steroids, but were supposed to start me on PLEX (Plasmapheresis) he came to the hospital and chewed out that floor neurologist, they took me off the steroids and put this IV in my left neck artery for the PLEX and for the next 10 days I had a treatment every other day, by the time I left the hospital, I was about 85% better – I had already started working on getting off prednisone, this took about a year, by Dec 2020 I was off all meds and no IVIGs since the incident, Jan 2021 I was in complete medical remission. If I was to do it again, I would get the thymectomy 1st and then follow up with the 5 treatments over 10 days right after, I really believe it was the combination of both that helped me be where I am today, not to mention the 50+ pounds I lost once I was off prednisone. 😁 🙏 ❤

[Scott White]

Current Age 57, Male – had Thymectomy at 53 May 2019, type of surgery VATS (Davinci robotic assisted) treatments before surgery was (Mestinon/Prednisone/IVIG) symptoms were weak extremities, difficulty chewing/swallowing/speaking and eyes – had surgery in the early evening, kept overnight for observation, left the following day with increased strength in limbs, speech, chewing etc.. continued IVIG treatments along with the usual meds, first week of my IVIG treatment, the pharmacy switched my IVIG to Panzyga from GammaGard, I was getting my IVIGs at home, within one-two days after treatment, I went into crisis, went into the ER and was admitted to ICU, I couldn’t speak or chew or swallow at that point and was having issues with breathing, was put on high dose steroids, via IV, within a day of that my condition worsened, my neuro order the floor doctor to stop, my doctor had ordered PLEX and not high dose steroids, but the floor doctor thought they knew better and almost killed me, for the next 10 days I did PLEX (Plasmapheresis) one treatment other other day for a total of 5, I was in the hospital for about 3 weeks, after the final PLEX treatment, I was released the following day as I had improved dramatically, I went on Cellcept August 2019 and for the next year  and 3 months I worked to getting off Prednisone, buy Jan 2021 I was in remission and the next 3 months got off Cellcept, and to this day I am in remission and I am extremely thankful, I believe the key was the thymectomy and PLEX.

[Scott White]

Lisa, I too am currently in remission, the two most common are medical remission, and medicated remission, you might what the difference is with those two definitions, well medical it through surgery and other physical treatments, I.E. PLEX (Plasmapheresis) and Thymectomy or even IVIG, Medicated is through medicine, Cellcept, Prednisone etc…. I have been in remission since Dec 2020, also the definition of remission is as follows : a diminution of the seriousness or intensity of disease or pain; a temporary recovery. “ten out of twenty patients remained in remission

Congrats on your journey with remission, I hope all whom experience this enjoy it for a very long time and those whom have not, get too – I hope remission lasts for you and everyone else for a very long time !

[Scott White]

Lisa, I too am currently in remission, the two most common are medical remission, not medicated remission, you might what the difference is with those two definitions, well medical it through surgery and other physical treatments, I.E. PLEX (Plasmapheresis) and Thymectomy or even IVIG, Medicated is through medicine, Cellcept, Prednisone etc…. I have been in remission since Dec 2020, also the definition of remission is as follows : a diminution of the seriousness or intensity of disease or pain; a temporary recovery. “ten out of twenty patients remained in remission

Congrats on your journey with remission, I hope all whom experience this enjoy it for a very long time and those whom have not, get too – Stay in remission my MG Sister!!!

[Scott White]

I’ve worked from home coming up on 16yrs this 2022, was diagnosed in 2016 with MG, so working from home has allowed me to manage my MG, much better then most and still provide for my family, I support my wife and two kids, the company I work for is extremely flexible & my manager is very supportive of my illness, even though I got sick I still feel very blessed , since I stopped working in an office long before I got sick, I don’t really miss being around coworkers anymore, and being able to be there constantly for my children has also been a blessing as my kids have always had their mom and dad there for them, I don’t think I could ever go back into an office ❤️❤️❤️

[Scott White]

Thank you, Renna – I do know the sooner you get it done the better the outcome, I didn’t know that when I was diagnosed though, I didn’t find out till later when I started doing research into MG – There is research out there now that even if you are older 60+ etc, you still could benefit from a thymectomy, but of course as with anything, there is a small chance it could actually make your MG worse, I decided to way what was better, quantity VS quality for my life and my wife and I discussed it at length and decided it was worth doing it 🙏❤ I do suggest you do your own research as well, but as you are newly diagnosed, I would consider the thymectomy sooner rather than later, I hope you also find remission 🙏 On a side note, I am more then will to share data I have collected on thymectomies ❤