May 18, 2020
What was your or a loved one’s experience in getting diagnosed with myasthenia gravis? Share your experiences here with the community.
May 30, 2020
Wow, I'll have to get back to this one...I have RA. I've had it for about 25 yrs I'd say. About 5 or 6 yrs ago, my husband and I were in New York City at one of the big hospitals speaking with a surgeon who was going to operate on my back. It was in his office that I noticed that I could not hold my head up. My neck didnt hurt. But this had never happened before. The doc told me to go home and make an appt with my neurologist. As soon as he saw me, he new exactly what it was. But what he wasnt counting on...was that medications would take it all away.
March 13, 2021
I have RA. My mother does not, but was diagnosed with MG about 2 years ago. She was having double vision while driving. Her ophthalmologist and GP both told her she did not have a neurologic problem. She insisted on a referral even though they told her emphatically she didn't need to see a neurologist. The neurologist diagnosed her MG immediately.
April 11, 2021
Hello , It's been a while since I've written on here. However, I see in my last post, dated May 30, 2020, I misspoke when I said the medication took the myasthenia away..it did not. My Neuo, gave me a medication to take..and called me after 48 hours to see if the symptoms were gone. I felt bad for him, he had such hope. The symptoms were not gone. Eventually it took a combo of oral meds and gamma globulin. I receive this treatment every so often. In fact - I'll be starting it again soon...Oh and yes dymphnayvonne- I also have the double vision as well.
This has been especially hard on my husband over the past year. He as been working from home during Covid, and unfortunately has seen a lot more of the frustration that I have with myself. Particularly in not being able to do things. At first it was easy to "hide" such temper tantrums" or crying. But with time..became more difficult. I am aware of how my mood appears everyday, and continue to work on that. Be well everyone, and of course- stay safe!
April 12, 2021