[Jools]

Hi jodi….are you in the USA..? I’m very interested in being considered for the new treatment but I’m in the UK. Has any one in the UK started this yet or is it still pending more approvals. I’d love to hear from UK members on that but also a bit more from you Jodi on your feelings about it. I’m 44 years with Generalised MG. I got it at 14 yrs old and I’m now 59. It’s only the last 3 year that I’m having weird flare-ups that’s affecting my speech/swallowing and facial movements, so this is very new to me. My Neurology team are also considering FND which has just added fuel to the fire. I’m not 3v3n sure what’s going on now but I’ve tried everything. Mestinon, prednisolone, ivig etc and are now starting Rituximab…..I just feel that I’m lagging behind with more modern treatment options and that I’m also just a guinea pig for tick boxes here in the UK. Once FND is mentioned, it just tips the boat over for specialists to say “we don’t know” and ship you off with a head full of fear and worry. I’ve looked after myself and reasonably controlled my MG for 45 years but this last 3 years are a mystery to me as to why now itsxall gone skew. ?? Ans FND never got a look in before. Yes, I’m very frustrated, fearful and mentally exhausted which dosnt help eh. Anyone got any thoughts. Much appreciated. Jools UK

[Jools]

Hi. I had a thymectomy 42 years ago when they opened up your breastbone etc and it was a major operation with a long recovery period. I know that can do key hole surgery nowxwhich is a godsend. However, i am absolutely in shock to see a trial where you wouldnt know if youd had the thymectomy or not. It sound extremely weird. Its only a theory still that a thymectomy may have a significant effect. Im 42 years sown the line and had my 3 worst MG crisis’s in the last 18 months or so. My Neurologist cant say for certain if the Thymectomy played an important role with my MG (generalised) from the start. Where is this trial taking place…? Also, why would a company need to do such a trial when there are 100s of MG patients that could fill out a questionnaire so easily and explain what a theymectomy did or didnt do for them. Id forget this trial and push with your Neurologist for a real Thymectomy if you feel it may be of benifit. Even psychological benefit is better than not knowing if youd actually had the operation. 🤔😬😲 Good luck tjo and take care. X