Do you have treatment goals?
Do you and your neurologist have measurable treatment goals? I know not everyone does, but because MG is not curable, it seems to me treatment should have some measurable objectives. Mine are:
SYMPTOMS: All the usual symptoms should be well controlled by medication 95 percent of the time: Little eye droop; no double vision; no mouth weakness or trouble chewing, speaking and swallowing; no breathing issues; arm, hand and leg weakness may noticeable but not debilitating, so long as I avoid excessive heat or cold.
FLARES AND CRISES: Zero crises and no flares requiring overnight hospitalization.
LIFETYLE: Able to shower and care for myself independently. Able to drive to town and do light shopping, banking, etc. Able to do or assist in light housekeeping, including cooking, laundry and dish washing.
ENERGY AND AMBITION: Able to awake each morning eager for the day. Able to make plans, do productive work and enjoy friends and family within my physical limitations. On a one to ten scale, I should rate my happiness and life satisfaction as nine or above.
These goals, of course, must change over time. I am 75 and in the process of disassembling. (That’s the word Space X uses to describe a rocket blowing up.) My own demise will be less spectacular but no less sure. I never want to confuse the progression of my disease, which is treatable, with the process of aging, which is terminal. I tell my doctor his job is not to keep me alive, but to keep my MG under control until I’m not.
I and probably many others would like to know if you have goals that you and your doctor can discuss and measure, and what they are.
male 73 here, seems you are doing much better than I am. My left eye is out of whack, dr says it has moved some, and not to have any treatments the opthamologist wants to do on it. Also got dry eye from all the meds, which is worse than the double vision. I have a severe case. When I search google, all my meds cause dry eye. Almost off prednisone, a few more days and I can quit that miserable stuff. Got the dry eye about 2 1/2 months after starting it, but all the other meds can cause dry as well, just lucky if it doesn't affect you.
David75, from Lee76. I appreciate and share your approach to MG, aging and health. My GP (and specialists) job is to keep me as healthy as possible, with my participation of course. My MG Neurologist is to work with me to accomplish best management of MG possible. My one additional ambition is to continue with European travel adventures with my wife.....though the trips will be at a relaxed pace, fewer 'must do's' and take time for the needed naps and occasional late mornings. Disassembling as best as I possibly can.
That's great to hear. I so agree. Do everything you can do while you can, making the adjustments you need to make. I made many trips to Europe, taking canal boats into the most remote little villages and vineyards. I can't do that anymore, but I'm so happy I did. As this disease progresses, your dreams peel away. So you make new dreams, smaller dreams, and find ways to reach them. We are lucky in one respect. Of all the terrible diseases out there, this is one of the most pain-free. It could be so much worse. I know I will never be well, but I will always be happy.
Agree 100 only thing I would have to change is the age. If you do. Not mind I am copy and pasting into a note for myself to reread on my hard days! Thank you for making it all balled in a nice size package. I am inspired.
I would agree with Jodi, thank you for sharing your goals, etc., and the reality of MG symptoms and aging.
A very helpful article and thought provoking. THANK YOU!
Matt
