Struggles You Experience as a Partner to Someone With MG

[Community Member]

A little over 3 years ago, my husband began experiencing problems swallowing and speaking clearly.  There were some days when he could barely eat.  I had to change meal preparation to allow only food that was very soft or liquid.  Over the course of 3 months he lost 60 pounds.  He also stopped talking unless he absolutely had to, because it was so difficult for him to speak and for others to understand.  He seemed like a totally different person.  I though I was going to lose him.

Then he was diagnosed with MG by a neurologist and put on mestinon 3 times a day.  At first it made an quite a difference in his initial problems, but he had terrible diarrhea. Then it seemed to become less effective.  The neurologist wanted to put him on prednisone, but he is also diabetic and knew that would make his diabetes more difficult to control.  He had told the neurologist that he did not want this treatment, but the neurologist was determined that was the protocol to be followed.  We changed neurologists.  At first he tried IV treatments at a local hospital, but we ran into insurance issues.  The new neurologist suggested home subcutaneous infusions of Hizentra every week.  I have never been fond of needles, but learned to give the subcues.  After about 5 weeks, he was able to eat and speak more normally.

In the last year, his neurologist has allowed him to decrease infusions to every other week and just recently to every 3 weeks.  We are so very grateful that the medication has been so effective.  I have had to wrestle with our insurance company since Hizentra does not have FDA approval for treatment of MG, but my husband’s doctor selected it due to fewer complications with his many other medications.  Even with our insurance, the medication has been very costly.  It has been worth it.

He uses a walker due to weakness in his legs, has little hand strength, and tires easily.  How much is due to MG, we do not know.

I live with the fear that MG symptoms will return or become worse.

[Community Member]

You’ve been through a lot. You were brave to find another doctor who would consider all of your husband’s medical needs. My husband had similar issues with swallowing initially lost alot of weight causing him to not want to eat out. It was so isolating for him. Me too as I enjoyed someone else cooking for a change. Be sure to take care of yourself so you can continue to advocate and take care of him. Getting the diagnosis and going on medication was lifesaving.