How Long Until Diagnosis?

[Michelle]

My first symptom was a drooping eyelid and the concern was a potential stroke, so they sent me to ER and after several tests they determined that it was not life threatening. At that time I didn’t have any other weakness.

I went to ophthalmologist a few weeks later and that was when I was diagnosed. I was happy to have it diagnosed quickly, but there is no dr where I live that specializes in MG.

I’m currently trying to get into Mayo, Barrow Neurological Institute or Cleveland Clinic. Hopefully, it will be soon!

[DocTim]

Stroke-like symptoms Sep 4, 2020… Sent home to recouperate.  Problems got much worse within 3 weeks, brought back in for Nuero blood work… Told I have MG on Sep 25th.  Thankful for quick diagnosis.  I know with many, it has taken months, even years.

[Robert Davidson]

I started pretty quickly having droopy eyelids and head, and went to my PCP doctor (she was able to squeeze me in the next day) and she sent me directly by ambulance to the ER at California Pacific Medical Center in San Francisco.  As soon as I arrived, the Triage nurse guessed it and then the ER doctor (not a Neurologist) diagnosed it by using the  ice bag test.  Then the on-call Neurologist immediately referred me to one of her office colleague Neurologists who specializes in MG (as well as ALS).  I was admitted and stayed in the hospital for 9 weeks getting three IVIGs and two plasma flushes along with Prednisone.  I was very lucky to be in one of the two top hospitals in San Francisco, second only to University of California San Francisco.  Interestingly, my Neurologist said I most likely had a mild case of MG for about 18 months, just without major noticeable symptoms that would have caused me to go to my PCP.

[Julie]

I was diagnosed quickly once I finally sought out a neurologist. My double vision started in high school but it was mild and transient. In college I noticed shoulder weakness and that my eyelids didn’t stay shut when I was sleeping. Nothing that ever led me to see a doctor until last year. I had been getting progressively weaker over the past 5 years but attributed it to menopause. Last year my optometrist suggested MG based on my description of my eye problems. By the time I got into the neurologist I was having significant bulbar symptoms and shortness of breath. Thank God she started me on mestinon right away and I had a great response which clinched the diagnosis. Now working on finding the right immunosuppressant.

Julie

[Leslie]

I started experiencing symptoms about 5 years ago (trouble focusing on drive home after work and trouble swallowing), but incorrectly attributed them to my SLE. It wasn’t until I started falling down stairs, losing weight, and having severe swallowing problems that I finally saw a neurologist. He diagnosed me right away.

[Robert DeBoer]

Sept 11, 2001, after a flight from Boston to Chicago, and finding out about the attacks in NY and DC, and not being able to fly back, I drove back to Boston.  On the way I noticed double vision, thinking it was from driving all night.  After I got home it got worse, I went to my eye Dr, who told me to see my PCP, he set me up with a Neurologist.  Over the next 5 weeks he had test done, brain scan, blood work, then diagnosed me with MG.  Put me on Mestinon, then Prednisone, but started getting worse, tried Imuran, which I had a bad reaction to, then Cellcept, 4 IVIG treatments, after 6 months of going down hill, (Loss of speech, etc.) I woke up one morning and most of the symptoms were gone.  It takes a long time for Cellcept to kick in.  So, my diagnosis went from Ocula, to Generalized MG in six months.  Since then (20 years), I have managed my MG OK with just Cellcept, aside from general weakness, and right eye drooping, I am almost back to normal.