New to MG (Dr appt Tuesday) Questions?
 

Was diagnosed 2weeks ago after trip to ER and running several test and taking a lot of blood. I have Dr appt on Tuesday and was wondering what questions do I need to be asking?
I’m currently taking 90 mg mestinonin (3X day). It hasn’t seemed to help much with anything other than eye drooping. I still have muscle weakness, some blurred vision, fogginess, and sometimes can’t chew food. Hoping for answers to help with these issues. A neighbor was diagnosed with this several yrs ago and after plasma treatments went into remission and has been that way for 5yrs. Would love to try and be blessed to have same results.. When I left Hospital Dr told me they didn’t have results of blood test, but he was going treat me as though I had MG since 1st dose had just about cleared up eye drooping. I’m also curious if anyone has had any luck with CBD oil? Thanks!

You are having a breakthrough, meaning your Mestinon isn't doing the job. This is how it goes. They put you on Mestinon and when you fail that drug you will be given "more serious drugs", as my neurologist put it. I was recently put on Cellcept 1gm twice a day. I must say I have already got some relief from the pain, or the rain has moved on. I am also going to start IVIG. I am a nurse. I am an infusion nurse. I've had my own infusion company and treated patients with autoimmune disorders. I would suggest asking for IVIG. I cannot take steroids (had a bait of that taking chemo) If you can stay off steroids, do so. That is the cure that kills. Prednisone is effective; but you are left steroid dependent, blood sugar issues, psychological issues as it can make you crazy, etc. I am using CBD; but it isn't the end all of treatment as some would suggest. Until it becomes "legal" I don't know the quality per bottle. I truly believe in Immune Globulin for Myasthenia Gravis. Let me know how you do!:hug:

Thanks for the reply. This has been extremely frustrating and scary to be fine one day and so weak the next out of nowhere. I have received 3 treatments of albumin/exchange. They put a port in which was extremely painful later that night, but does make the process much easier. I felt better after first one, but have been about the same after last two. Hopefully, I’m making progress. Had a rough morning with a lot of weakness. After washing hair and putting on clothes I couldn’t get up out of chair. After resting about 20 minutes I was able to get up, but still felt weak. Still not seeing much progress with mestinon. Now taking 4 X day 90mg plus 1 @ bedtime 180mg time release. Hoping to find something that works.

Hang in there. Some days can be very frustrating and some less so. I have done well on mestinon but am now having increased slurring of speech. It used to be only at night in social situations but now it is happening during the day. I hope it subsides and am taking several days to do as little as possible. Rest whenever you need to.
Karen