Hi Jessica,

Scary times. I hope you have a good neuro and family doctor to help you through the process of getting this under control. This community is great if you have any questions from someone who's going through the same thing as you or if you just need to rant. We all understand here Just remember, we're not doctors (at least I'm not) any advice should always be confirmed with your primary care physician.

My symptoms started getting better immediately after my thymectomy (my ptsosis almost completely went away and hasn't returned), but... I still have symptoms and they're being controlled with Mestinon. This is a year and a half after my thymectomy. The symptoms continue to get better over time. They should have told you, thymectomy can take 3 to 5 years for full effect (that is as much as it is going to do for you can take up to 5 years to complete) It may put you into remission, it may not, it may lessen your symptoms significantly, a little bit or not at all. We're all unique in the way that this disease treats our bodies and how much we react to the treatments.

I don't take pred currently so cannot answer that question. I try hard to avoid steroids personally, but if they're needed they're needed. You are on a large dose of Mestinon. Did they start you that high or did you work your way up to 120 x 4? I started 60 x 3 and am at 60-90 x3 depending on how I'm feeling that day. If you're taking too much it can cause MG like symptoms. Your problems getting out of the couch could be linked to taking too much Mestinon. That's something you may wish to discuss with your neuro... is the dose right for you?

I work. Currently at the office, but with flu season coming up I'm going to be working remotely (from home) starting in a few weeks. My work can easily be done this way and my employer has been absolutely amazing with their support while I've been getting better.

Best of luck.

Brian.