My MG

Every Myasthenia Gravis patients is different. Their symptoms and treatment plans all vary. This is how MG affects me:

  • Muscle weakness in my eyes (& double vision), legs, arms, fingers, hands, jaw, swallowing, neck, and diaphragm.

The problem is not with having all this muscle weakness, but the fact that every minute, hour, day can fluctuate. I can wake up in the morning feeling great, but come 2:00pm I am fatigued to the point I have to cancel plans. I can have a few good days, or a week full of bad days. I never know how I am going to feel. Every day is literally a mystery.

My course of treatment for my MG:

  • Predisone
  • Cellcept
  • IVIG infusions every 4 weeks for 5 days.

This is my mg treatment plan it’s not my medication list. In order to have a “normal” functioning day I need to force down a hand full of meds. There is the medications to help my stomach from the prednisone. Along with multiple vitamins since I am on this long-term and the effects are severe to your body. Then there is the anxiety meds to keep me somewhat sane. I have to take thyroid medication due to hypothyroidism. We can’t forget the birth control pill either. All these medications have side effects and if I were to get pregnant it wouldn’t be healthy for the baby.

When I get my IVIG I have a visiting nurse come to my home to infuse me. These infusions last about 5-6 hours a day for five days. That is 5 days of someone being in your home watching you. Checking your vitals every 15 minutes for the first hour. Then every half hour for the rest of the day. When I get my infusions I need to premedicate with Tylenol and Benedryl. So all I want to do is sleep, but the presecence of someone in my house always makes me want to stay awake.

The reason I need to pre-medicate with the Tylenol is because one of the side effects is migraines. I take the Benedryl because with every infusion (each day) I am at risk of a reaction due to it being a blood product. So taking these two medications is a precaution to avoiding any other issues.