Hello!
I was diagnosed in March 2020. I am a 30 year old female...I'll give you a little backstory..heads up it will be long!
To start- I have never had health concerns in my life.
I went to the local clinic because my left eye was becoming more and more closed and double vision. He immediately recommend I go to the ER because it could be a number of potential problems. I got to the ER at first they thought I was having a stroke, but a Chest CT and Head CT Scan ruled that out. THey found I had a slight left artery tear. They said this was the reason for the droopy eye and double vision. I went to the OR for a stent procedure and they ended up deciding against it and that my body would heal naturally. It eventually did. Days and weeks pass and my eye was going back to normal but the double vision stayed. I went back to the doctor because my speech became difficult. It feels like I can barely move my tongue and it is swollen, even though it appears normal. After labs they determined I had MG because the ice pack test worked on my eye and after rest my tongue goes back to "normal".
After this I was placed on a high dosage of Prednisone(80mg) and tapered twice but I flare right back up. Mestinon has worked on and off without explanation. I have had plasmapheresis and IVIG multiple times.
IVIG always seems to work for about 6 months.
Now I have tried prednisone (still taking 10mg) and imuran.
Imuran didn't work.
Now I am still on Prednisone and trying Cellcept.
Anyone only experience speech issues with their tongue? I haven't had droopy eyes or double visions since this first started. Has anyone had success using CBD Oil or similar? I'm opened minded here.
Thanks!