My Story

Hi, everyone! I’m 70 years young, a Mom of 3 sons and Grandma of 5, ranging in age from 2-year-old twins to my oldest granddaughter, a senior in high school this year! I am also a caregiver and caretaker to my 94-year-old mom, who has lived with me here in New Jersey since 2016, when my Dad passed.

My first signs of MG

I was diagnosed with MG two years ago. One day while driving home from grocery shopping, I began having double vision. Pulling over to the curb, I waited till it passed then continued home. I called my eye doctor, who said to come right in.

To my surprise and frustration, he could not complete a full eye exam because I could not raise my head up high enough to put my chin on the machine's chin rest. When I tried to raise my head up, it was impossible and felt like someone had a rope tied to my neck and was pulling it down! The doctor made the call to our orthopedic group and I was seen the next day.

Misdiagnosis and more problems

After a series of tests, X-rays, etc., they told me I had severe osteoarthritis and a “re-tearing” of my previous rotator cuff surgery. They said would need physical therapy and neck injections to relieve the “ pressure.” That was in May 2022.

I followed the course of treatment that summer through the fall, with PT three times a week, and injections of anti-inflammatories and prednisone all to no avail. I was actually feeling worse --  now my head was totally down on my chest, and walking my dogs became a real challenge. I experienced dizziness, balance issues, and then numbness, tingling and weakness on my right side. Blurred and double vision now occurred every day after 4 p.m. Life was getting difficult, and I was very depressed.

Getting answers and dealing with feelings

I returned to my primary care doctor and she said, "There’s something else going on here, and I’m sending you to a neurologist. After waiting a full month for all of the bloodwork to come back, he diagnosed me with myasthenia gravis.

We had a long discussion and I asked a thousand questions. I returned home feeling sad, down, confused, frustrated and yes, angry too! Why me? Why now? I am a retired speech pathologist and spent most of my life working with disabled children, then raising my three sons. I was always a very physically active person, spending time with my grandchildren, taking care of my Mom, my home, my dogs and life in general. I love cooking, gardening, swimming and the beach -- I was still riding the waves on my body board until two summers ago. I was devastated.

Finding the right medication

The first treatments I had were the IGIV in the summer of 2022, but they did very little -- no positive results, so they changed me to Vyvgart infusions, which helped a lot. My strength was coming back, vision was better and I could hold my head up a little higher. But after 18 months I plateaued: Not better, not worse, just in a holding pattern. This past June my neurologist switched me to Ultomiris, and wow! I saw great improvement and the infusions are every eight weeks.

As I continue my reading on MG sites and forums, I see many of you out there take prednisone and Mestinon. I chose not to do these -- too many side effects, some worse than the MG symptoms itself. So I just do my Ultomiris infusions, avoid magnesium, bulk up on D-3, turmeric, collagen, B-complex and a multivitamin.

Making lifestyle changes

We also eat a fairly healthy, home-cooked diet. My Mom has survived two strokes, so nutrition is important, and keeping a diet high in proteins but low in cholesterol. We eat lots of fish (when it’s on sale), baked or broiled chicken, fresh veggies and seasonal fruits, hibiscus tea, nuts, lentils, kidney beans, black beans, and yes, eggs -- high in protein and recommended by her neurologist! Also, I love my coffee and drink three cups a day. (Sorry MG, I’m never giving up my coffee.)

Resting mid-afternoon is a must, and I found that not letting yourself get too tired or too stressed is the key to balancing MG symptoms. I was always a, "Let’s get it done now!” person. Now I’ve learned to change my mindset. Now, I say, “Let’s get done what really needs to be done, and break jobs and chores into segments. Don’t overdo it, don’t push until you’re too tired. Write an hour or two into your schedule to rest, even if it’s not a “real” nap. Just sit back, get those feet up, do something calming, relaxing, or nothing at all!"

All of this really helps me get through the dinner hour, cleanup, dog walking, and Mom care. By 9 p.m. it’s lights out.

Lessons I've learned

I hope I have shed some light on how to survive and cope with MG. As a single Mom/Grandma it’s not easy, but life is not always easy or what we had planned. Someone’s always throwing you a curveball. I’ve learned to make MG my friend rather than an enemy, and when symptoms are kicking up and kicking in, I don't fight it. Instead I say, "OK, having an MG Day today, need to re- think my schedule, rest a bit more, cancel that appointment." Maybe I don’t drive that day.

Whatever it takes, listen to your body. Don’t feel guilty, like, “Geez, I didn’t accomplish a whole lot today." Instead, say, "Oh well, that will go on tomorrow's list,” and thank God for each day you can move, drive, walk, play with little ones and pets, see your friends, enjoy a nice meal and make the most of all of it.

I have MG, but MG doesn’t have me! Thanks for reading. God bless you all and try to enjoy this beautiful fall- like weather, too!