Deborah A Dortzbach

Thanks for all sharing these insightful experiences. I can identify with many of them. Until I got more control through mycophenolate (cellcept) I had some critical incidents driving that left me scared, especially while on the freeway at night. It was enough to keep me away from driving at night under those conditions–the glare, the multiple…[Read more]

Just chiming in on the steroid question and choice of doctor. With MG it is important in my opinion to remain with as knowledgeable a physician with MG as your insurance and physical location allows. The field has significant scientific advancement but it is specialized and takes such individualized management making physician practices difficult…[Read more]

Just chiming in on the steroid question and choice of doctor. With MG it is important in my opinion to remain with as knowledgeable a physician with MG as your insurance and physical location allows. The field has significant scientific advancement but it is specialized and takes such individualized management making physician practices difficult…[Read more]

Exercise is essential and now becoming routine for me, but responses are still sometimes unpredictable and that can be challenging. Learning to plan for and interpret unpredictability is part of the “adventure” and acceptance of this challenging condition–but that is exactly what makes MG–well, never boring! I also have a systemic rheumatic…[Read more]

I am blessed to have received Evusheld Antibodies — twice, in fact because the first doses  were deemed inadequate, and I just went for “catch up” doses. I had no real reaction, except headache the second time. I am extremely grateful for this layer of prophylaxis protection.  In addition to MG, I have ankylosing spondylitis (AS), an additional a…[Read more]

So good to read all these! I am also seronegative. This is my 3rd year anniversary and I am 72, so you can see I was a “late comer”. Double vision was the prompt that took me to the ER, single fiber EMG the eventual confirmation. Like many of you the past three years have been a journey—mestinon, a constant companion, IVIG an early necessity for a…[Read more]

Warm greetings fellow seniors! As a 72 year old diagnosed with myasthenia only 3 years ago and now learning to cope with generalized MG, I am blessed to learn with you all. I am witness and partaking of all you speak of—unannounced (and most unwelcome) fatigue, trials with different medications, sleepless nights, interrupted careers and r…[Read more]

Definitely. Prednisone is the known culprit. After two years of prednisone, I have tapered to a “baby dose” and am trying to lose the associated weight gain which is a struggle, along with the depreciated self-image. But, I am thankful for improved strength and independence. The trade offs are worth it. That is what we have to keep focused on!

I can relate to many of your concerns–with driving, eye fatigue, feeling droopy eye, sun sensitivity. Here are some of my tricks and lessons and go-tos. Always keep eyes moist–my opthamologist recommends RefreshPlus eye drops and I always have them in my pocket for use multiple times a day. Take multiple breaks from computer, phone, TV, reading,…[Read more]

I joined a family book club. We are all women, limit books to good novels, pass the recommendations and facilitation around and give ourselves plenty of lead time and meet by zoom. It has become low pressure (because you don’t have to finish to book to join in) and really enjoyable and yes, helping with stress–especially when I can’t sleep at…[Read more]

Michelle, I love your activity–and I also find that cooking helps me–just the kitchen aromas and promise of yummy delights coming from something I made as well as the enjoyment of sharing goodies with others and getting the focus off myself. Other activities that nurture strength and harness anxiety include uplifting music. I am trying to build…[Read more]

I sometimes don’t know what is a “flare”, which I interpret as a more prolonged period of MG symptoms or what is the unpredictability of an “MG day”.  So, in many ways, I am still learning about how to respond to physical, mental, and emotional triggers.  But I will say I often notice a predictable “lag” 1/2 way through the day for me. I seem to “…[Read more]

This continues to be an ongoing challenge. Today I received my 3rd dose of Pfizer vaccine (at the recommendation of my neurologist). I am very grateful for this “boost” and at the same time aware it is not complete protection since I also take cellcept, prednisone, and a biologic for another systemic arthritis in addition to MG. But I am…[Read more]