-
This has been super helpful information. Thank you so much for responding to me. I actually live in Kansas City which apparently is the headquarters for the Myasthenia Gravis Association. They have 2 clinics here one of which is where I have the appointment on November 21st. The other clinic hasn’t called me back yet. I have been receiving assistance from the Executive Director of the MGA but there is only so much she can do.
I was wondering how long ago you were seen at the University of Cincinnati Gardner Institute? At this point, I know my neurologist will be willing to send a referral anywhere if it will get me evaluated sooner. The fact that you were seen within a week of them receiving a referral blew my mind! I have been trying to think of other places I could possibly try to get into like Mayo or John Hopkins. However, if you had a positive experience at the University of Cincinnati Gardner Institute and I can get in within the next 2 months or sooner, I am more than willing to travel. I am currently living with my parents and they see me steadily declining. I know they will take me anywhere so I can get help.
My current neurologist specializes in migraines but he has been so helpful in prescribing me the medication and listening to my suggestions of adjustments as to how I am reacting to the medication. Tonight is the first night that I am trying the 180mg ER to see if it helps me sleep better and have an easier morning. Crossing my fingers that this helps so that I am not crying myself to sleep every night because all of my muscles are cramping and twitching.
Anyway, thanks again and I appreciate any information you can provide about your experience at the University of Cincinnati Gardner Institute and what information I can provide my neurologist. 😊