I find doing things in the morning are a lot easier than later in the day.
I was diagnosed two years ago at 70 but looking back I now realize I had symptoms about 2 years prior but didn’t understand what I was experiencing. I did the mestinon and it worked for about 6 months and then nothing. I’ve been hospitalized 3 times since my initial diagnosis. I started Vyvgart and did 22 infusions and again nothing. In December I started Ultomiris and after my first two treatments I thought great this will bring me back to feeling like myself but have not felt like I did after the first two treatments. In June my doctor, a neuromuscular specialist added cellcept in addition to my infusion. Started at 1000mg with no change and increased to 2000mg this past Sunday. I’m hopeful this will make a difference. The most difficult thing for me has been the change in my lifestyle. I was always a very active person but I’ve had to make major changes in my day to day activities. Everyone is different so make sure and track your symptoms on an ADL scale. You can download it so you can talk to the doctor about them. Good luck and remember one day at a time.
Thank you for your words of encouragement.
It is so very hard to accept the changes MG will demand in your life, especially when you have always been so active. I had to go from mountain climbing and bicycle touring to the life of a meat loaf. A lot of your dreams die. But you can adjust and find happiness. Honest. I'm not the person I imagined I would be when I was younger. But I am perfectly happy and maybe more productive because fewer things vie for my attention. Once you finally accept that you have a serious disease and will never be "normal" again, you are ready to move forward, focusing on the things you can still do that bring you joy.
I am optimistic the cellcept will eventually bring you symptom stability and predictability, but it could take many months to begin working. Be patient. You're doing everything right. The first two years are the hardest. It does get better.
