Causes of Minor MG Flares and How to Deal with Them
Ever since my medication change to mycophenolate (CellCept), I’ve done quite well! I’ve had very minor issues since then and I’ve lost about half of my prednisone weight. I’m glad to be off of prednisone and the Mestinon. So, Mycophenolate alone has controlled my symptoms rather well ... until recently.
Added stress
The last 2 and a half years my husband has been very ill and nearly everything has fallen on me to address. Though that doesn’t sound too bad, you have to consider my activity and stress level during that time. I also worried about his welfare the entire time and he had little to no memory of most of it.
My duties were to care for him, including preparing all our meals, keeping up with the household duties, taking care of our garden, harvesting our crops, preserving food, getting him to the multiple doctor appointments, etc.
For some people, that may not sound like much, but that garden kept me very busy most of the day, and it was hot! Then we lost our precious cocker spaniel. When we lost our pet, that was just another stress to add to what I already had.
Managing the fatigue
Fatigue! Oh, the fatigue! I’d be on the go from the morning to late at night. I had almost no time to relax or enjoy. I'm not asking for sympathy, I’m just explaining where all the stress and fatigue came from.
That said, I don’t understand, why I'm flaring now? During the time when I was constantly working all day long, I did fine. But now that my husband is doing a little better, the garden is put to bed, I’m coping with my fur baby’s death ... why now?
First signs of the flare
Thankfully, this flare-up isn’t bad, but it has been concerning. It started with breathing difficulties and much more pain in my neck, arms, back, and legs. I also have asthma, so it’s difficult to tell sometimes if it’s asthma, myasthenia gravis, or both.
After a few days of this, I noticed my eyes felt like they had gravel in them. Then, the right one started the myasthenia "pull". It felt like someone was trying to pull my eyeball to the back of my head, which is how it felt when the myasthenia was very active.
I had difficulty keeping both eyes open and when I’d tire, car lights at night became a nightmare! Then my eyes became slightly out of alignment and very minor ptosis set. Thankfully, no double vision!
Combating the symptoms
I do have an appointment with my neurologist, but in the meantime, to combat this, I’ve treated the breathing issues as asthma and it has worked well. I’ve made sure I’ve been getting more rest and, even thought it's difficult, I have stopped pushing myself so much.
That said, I’m doing much better and I’m so thankful it hasn’t gotten any worse. All in all, I consider myself fortunate and compared to some, I’ve had an easy time of it!
In fact, sometimes I feel guilty when I know some of you have much worse symptoms and experiences than I have had so far!
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