Just diagnosed
After advocating for myself, I was just contacted by my Dept of Veterans Affairs primary care and neurologist...30 minutes ago...on a Saturday. They both expressed that they were sorry they didnt diagnose me sooner. My biological mother and grandmother both had it, passed away last year. Unfortunately I have 2 TBIs sustained in combat a few years back. I am 44 years old. I have been a paramedic for 26 years. Advocating for myself and pushing for blood work turned out great. Any advice for a newbie would be wonderful.
The double vision sent me to the eye doctor, who after a couple hours sent me to the ER, and at the ER I was diagnosed in a couple hours, the droopy eye and double vision, the Neurologyst at the hospital suspected MG, so he gave me Pyridostigmine and in about 2 hours the double vision went away, and he was like ... you likely have MG. The Acetylcholine Receptor (AChR) Test confirmed it but took a bit to get the official results. The bad thing with MG is without treatment or improper treatment, it can get pretty bad, the swallowing, choking, not able to speak, but but but... once you get on the correct meds, it becomes more of a nuisance and far less of a crisis. I used to hike 2 4k's a weekend, can't do that any more. I go on a 1 mile hike i need to take 6-8 breaks, but flat walking or hanging out, or eating and drinking, ALL good now. There are LOTs of medications, so if you are like me and allergic to many of those, there are others. Currently i'm on prednisone and Vyvgart, and that combo is working for me.
Thank you so much. Its good to known I'm not alone. I really appreciate the help.
Your story is, unfortunately, very common. I would guess that the majority of MG sufferers had to diagnose it themself and insist on the blood test. You should be immediately prescribed pyridostigmine, probably four times a day. If you have garden variety MG, it will make an IMMEDIATE difference. Your doctor may also consider a steroid burst and an immunosuppressant. There is no cure, but MG can be well controlled through a regimen of meds. It sometimes takes a long time to get full control. Be patient. But be confident that you WILL get better and usually quite rapidly. Best of luck and thanks for your service.
