My Introduction to MG

By Bruce Douglas

1 min read

I am 71 years old and was enjoying my retirement and, up until now, was doing 4-6 hours of heavy gardening/exercise 6 days a week.

How it began

My introduction to myasthenia gravis began suddenly. It started only 4 weeks ago with double vision, droopy eyelids, and difficulty breathing. The initial diagnosis was an allergic reaction but my symptoms worsened. The neurologist eventually diagnosed 'mild' MG with a positive outcome.

How it progressed

A week later, significant breathing difficulties heralded the start of a rapid onset MG crisis. I went into the ICU, and on a ventilator. Now I am diagnosed with 'severe' MG.

I had never heard of MG. Because of my wife's health background, we have thoroughly researched it. I now understand I am in for a long journey but I am prepared to be patient [ha ha].

The road ahead

I was started on a new regime of IVIG, immunosuppressants, and preventative drugs. My wife now has to carry the load of keeping me and our home together on her own. Having to stay isolated from children and grandchildren is hard but they understand. Hoping the New Year will see improvements and a bit of normality.

Share my own story

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Jodi Enders Moderator & Contributor
<inline-mention username="Bruce Douglas" user-id="4516930"/> Hi Bruce! How have you been doing recently? How is the wife? You had mentioned staying isolated from the family had been challenging. Have you been able to reunite with any? Positive vibes - Jodi, Team Member
1. Bruce Douglas Member
 <inline-mention username="Jodi Enders" user-id="4496596"/> Jodi, Thanks for your thoughts. I have recently had my 2nd COVID booster and am more comfortable getting out. I was able to catch up with my daughter, son-in-law and one grandson and two granddaughters for my 72nd birthday. Still to see my son, daughter-in-law and other 3 grandsons - hopefully soon. On the general health front, my specialist recently increased my IV/IG [now 1g/Kg every 4 weeks] and things are much better. Heather still owes you her thoughts on being a carer but she will get around to it. Cheers
Bruce Douglas Member
Jodi, Thank you for your kind regards. It might seem funny [peculiar] but I was relieved when I was put on the ventilator - I had been struggling to breath and was worn out. I actually tolerated the ventilator pretty well but was glad to be off. I recently saw my specialist and he is still positive so I am trying to be the same. I do get frustrated that I am unable to help my wife around the house and garden. [Heather will post her story a little later - typically she is busy doing things that I would normally do.] Our retirement activities are fairly restricted now due to COVID and hopefully once that hurdle is overcome my MG symptoms will be more under control. One positive is that my double vision is under control and I am able to share the driving. Hopefully we will both continue to have more good days. All the very best for you and all the readers.
Jodi Enders Moderator & Contributor
<inline-mention username="Bruce Douglas" user-id="4516930"/> Hi Bruce. I just had the opportunity to read your story and my compassion for you. I am newer around here. I also had a sudden crisis that led to my diagnosis, never experienced symptoms before! Mine was onset by Hydroxychloroquine. We are so different, but I love connecting through our diagnoses. We both seemed to be living up opposite ends of the "good days" when diagnosed. I was in college (last year), and your retirement was interrupted! The audacity of MG, haha. I never reached the point of breathing issues during my crisis. Thankfully, I never did before receiving my first round of IVIG which sent me off on a good foot with the immunosuppressants and Mestinon. It must have been such a traumatic experience being on a ventilator. How have you been doing? I will love to hear all updates if you are up to sharing and comfortable! I would also appreciate getting an update on your wife! How are they handling all of this uncertainty and stress? - Jodi, Myasthenia-Gravis Team Member
Juliana Texley Moderator & Contributor
It seems odd to say "Welcome" but you will find warm support here. Your relatively quick onset is unusual among the stories you'll find here, but you'll also see us use the term "snowflakes" to refer to the fact that every case seems different. The ultimate functional symptom is poor communication between nerve and muscle, but it seems that there are many ways that can happen. On this site you'll see many (long and frustrating) paths to diagnosis. But you'll also see many stories of paths to remission. Research is very active (and productive)--even with such a rare condition. So continue to be positive and stay in touch. Juliana (Myasthenia-gravis.com team)