Hi Kathie,
Thanks so much for your note.
I canīt say Iīm in remission of something that is only a
suspected diagnosis given by an MG neurologist/researcher.
But I
do know what it is to have those exact same fluctuating and debilitating myasthenic symptoms - day in day out and asking myself:
- Is it going to be like this for the rest of my life?
- Will I ever be able to plan anything again?
- Will my day always feel like itīs over by 9 a.m.?
- Will I ever know exactly how much an activity is going to cost me after the fact?
- Will my son feel like I didnīt love him in childhood?
- Will I ever be able to get even the smallest glimpse of the life I used to have back again?
And
yes, I can at least with 100% certainty say that there is hope for people suffering from long term progressive myasthenia that may or may not necessarily be Myasthenia Gravis! In a fluctuating disease like MG the clues given during remission I would think are just as important as those given during flare ups in a disease where 30% are
supposed to go into remission. I wish more people who have gone into remission would come by here, out of duty and gratefulness, and post from time to time to give a more balanced picture of the outcome of this disease, and very importantly, like you say, to give hope.
Oddly enough for me, during a time with no detectable symptoms, stress was
not able to trigger any myasthenic weakness at all - but heat has done so in such an
extreme way - pretty much back to some of the same spots as it left off - except with one
increased increment in severity regarding the bulbar issues. I guess it was nice to have hand weakness resolve in 2 weeks instead of
2 years, which is what it took the first time round. As of today, it is just the deltoids that are left to resolve.
Always those deltoids! – the first of my muscles ever to be affected with myasthenic weakness all those years ago.
I also do wonder if the heat trigger
fluctuates for some people ie. one year heat is a great trigger, but the next it is not. Or is temperature generally a
stable trigger….
OK. So I really do hope you will get your thyectomy followed by a wonderful remission. Be careful with those symptoms you are having and I wish you all the best of luck tomorrow and will check in sometime soon to see if you have posted your progress information in another thread.
All my best.
Anacrusis