Reaction to Myasthenia Gravis Diagnosis

[Jodi Enders]

What was your reaction when you were diagnosed with Myasthenia gravis?

Did you have time to grieve, or did you feel your time to accept the diagnosis was interrupted by treatment?

Who did you turn to for support?

Did searching the internet for answers help or worsen the experience?

[isy]

I was very happy to have been diagnosed with Myasthenia Gravis because I had initially been thought to have ALS. Therefore the MG diagnosis was much better.
I also had a brother who had Myasthenia Gravis, so we could exchange our thoughts

[Jaimie]

We all thought it was my Thyroid causing all of the problems. My eye doctor did the cold pack. Then sent me to have a blood test. Yep it came back positive. I have Myasthenia Gravis. So I call the Neurologist. The could see me in 6 weeks. I screamed into the phone “I won’t make it that long”.   What do you know I got an appointment the next day.

Now I am a lot calmer knowing what I have. It has been only a month since diagnosis. I have fallen, couldn’t get out of my bed, can not wash my hair and can not throw darts anymore.

I am alive still.

Jaimie

[Amy Cessina]

I sat in a chair in my home and cried the entire day without moving and probably the next few days also. I didn’t even go to work and I didn’t go for about 8 weeks. I was on disability but not for the MG it was for anxiety. I went back to work after that full time. Haven’t looked back. Personally I felt like reading all the MG websites made my mental health worse. Plus the information is always worse case scenario. I wish I hadn’t read some of it to this day.

[Christer Whitworth]

To be honest, I didn’t know what to think. I went in to my ophthalmologist for a cataracts consult, but the very day before, woke up to double vision. Turns out my guy is a MG specialist and recognized my symptoms immediately. The cataract discussion went by the wayside instantly.

The episode passed within two days and haven’t had one since (10 weeks and counting).

He never said that I had a high likelihood of degenerating to Gereralis MG from my Ocular, but recent reading says it is quite likely within 2-3 years. Is there anyone here who has gone from Ocular to Generalis and can share how that went down?

Hand wringing seems a bit pointless at my age of 65. I have read that some have taken the diagnosis as a wake up call for lifestyle changes, but there doesn’t seem to be any evidence that losing weight, building muscle, giving up alcohol, etc. has any effect on the outcome. I wish it did!

I wish everyone contributing the best. The stories here are pretty harrowing.

[Author]

Posts