It's Not Always a Struggle with MG

So far, I’ve mostly written about everything that has been a struggle with myasthenia gravis (MG). However, not everything I’ve experienced has been a struggle. It’s time to talk about the positive things that have happened to me in spite of this disease.

I found the right MG treatment

Several months after my diagnosis, I was sent to a neurologist at Vanderbilt University Hospital. It was actually my first neurologist, the one who diagnosed me, that referred me to Vanderbilt. He had admitted he wasn’t well versed in MG, so he wanted me to see a specialist in neuromuscular diseases.

At Vanderbilt, I saw the assistant professor of the neurology department. At first, she kept me on the same treatment plan of Prednisone and pyridostigmine. However, about a year later I was having some complications. Due to these complications, and the potential risks of Prednisone, she wanted me off that medicine. Instead, she wanted to start me on a drug she had read about in her medical journals that was helping MG patients - CellCept.

She went over the possible complications of both drugs and explained that there were more long-term side effects of Prednisone. So, together we decided to try CellCept. I had been diagnosed with ocular MG, and the pyridostigmine alone wasn’t helping anyway. CellCept was exactly what I needed!

Sometimes I forget I have MG

It took about 6 months to wean off Prednisone and for the CellCept to build up in my system. Once I was off Prednisone, I started losing weight and fluid, which was incredible! From then on, CellCept has helped me lead a near normal life most of the time. And the fact I was losing a lot of weight pleased me greatly.

Even though I sometimes still have MG symptoms (more than I’d like), I’ve been able to almost forget I have MG at times. I still have to be careful about not becoming too tired, getting too hot or too cold, or having to deal with muscle pain. I also still have some weakness at times, but thankfully it isn’t all the time, and I have had fewer breathing issues since my pacemaker surgery.

I continue to do the things I love

I enjoy cooking and developing my own recipes, as well as updating older ones from my mother. I also enjoy doing crafts and scrapbooking. Music is another pleasure. I love playing the piano, keyboard, and singing. Sometimes, my fingers hurt and are stiff, but I still play and sing as much as I can. However, the best thing of all is being able to interact with my grandchildren and great grandchildren. All these activities and more help me cope with MG sometimes forget about it altogether.

I take advantage of the summer months

For me, winter is depressing. That’s when I seem to feel the effects of MG the most. The cold causes me more pain, which in turn causes me to become moody. Negative emotions also seem to produce more of my MG symptoms. However, the summer heat doesn't seem to both me as much, unless it's coupled with high humidity. Therefore, I am able to do the things I love in the summer, such as gardening, playing outside with my dog, enjoying outings with me family, and more.

Being outside when it’s warm and beautiful is my happy place! I grew up on a Kansas farm and I was always outside playing with all the animals and riding my bicycle. I’m no different now.

Finding happiness with MG

I’ve found the happier and more content I am, the less I feel the symptoms of MG. We all know how MG feeds off our stress. There’s a huge difference in how I feel during the warm weather months versus the cold months.

I truly believe the happier we are, the less we will have to deal with some of our MG symptoms. Though I get moody and let my guard down, I really try to maintain a positive attitude. Enjoying the best life available and keeping a positive attitude (when possible) have helped me immensely. Hopefully, it will help you, too!